#1665 Kent Has Something to Say

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Kent Schnakenberg returns to share how one bike ride turned into a life’s mission—raising awareness, saving lives, and inspiring thousands through Team Schnak Strong and the fight against type 1 diabetes.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Friends, we're all back together for the next episode of The Juicebox podcast. Welcome. Hi. This

Kent Schnakenberg 0:13
is Kemp snackenberg. I started team snack strong, you know, back in 2014 and I'm very, very excited to be back on your podcast. It's amazing to me how you grow on this thing, and I'm so proud of you, and how many people continue each year to say they listen to that podcast and reach out to me. So I'm excited to be back on Scott.

Scott Benner 0:31
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Kent Schnakenberg 2:14
This is Camp snackenberg. I started team snack strong, you know, back in 2014 and I'm very, very excited to be back on your podcast. It's amazing to me how you grow on this thing, and I'm so proud of you, and how many people continue each year to say they listen to that podcast and reach out to me. So I'm excited to be back on Scott, is

Scott Benner 2:33
that true? Kent, you were on episode 76 which, I mean, maybe is the second year with would that have been 2016 maybe? Well,

Kent Schnakenberg 2:42
I just thought it was 10 years ago, so it's probably 2015 or 2016 and that first year just was started getting messages and emails and stuff on Facebook for people all over the country. And when I was doing, you know, the rides all over the country that year, that's how I started meeting people, going to their houses and take it out to eat. So you obviously have a big following, and that's why I'm excited to get another chance to kind of give you a 10 year, a 10 year recap of what's gone on since

Speaker 1 3:08
then. Yeah, no, that's awesome. I'm trying to look up the episode right now. I think it was 76 Yeah, yeah. I'm just seeing that now, so, but I'm trying to figure out what year it was, see if I can't find it like it's it's been so long ago. Oh, I know what the problem is. When I search for 76 there's been 41 other episodes with the number 76 in them. That's why I'm getting so that's why I'm getting so

Kent Schnakenberg 3:34
many returns. I really think it was 2016 for some reason, 2016

Scott Benner 3:40
Okay, well, that's really great. Oh, I appreciate. I do want to kind of start from the beginning, even though, you know it's going to be something you said in the past. Tell me again how this all started, what your connection was to it. And then we'll, we'll pick through, okay,

Kent Schnakenberg 3:52
well, I mean, in 2014 my connection is, you know, my niece, Michelle, and she was diagnosed, and she was 14, and obviously that's quite a while ago, and she's doing amazing. She's now a pediatric nurse. She went through Texas A and M with full colors. Now she's helping kids and giving back that way. And I just decided, my brothers and I decided to go to Lake Tahoe for a JDRF ride, which I had no idea what JDRF was or nothing about type one diabetes at the time, but my brother said that'd be fine. So my twin brother and my younger brother, Mike, who's Michelle's Father, we went to Lake Tahoe and rode 73 miles around that lake, met a lot of people, and really did enjoy it. I got back on the shuttle bus to go back to the airport. I said by a young lady, her name was there,

Scott Benner 4:40
CGM on her arms. Ken Tell me again. I you dropped out there. Her name was, what her name was, Aaron. Aaron. You know what? Kent, I'm gonna stop you for a half a second. I think I figured something out. Because, okay, you remarked to me that the first time we did this, we had audio trouble, right? And just now i don't i think i. Think there's something about the resonance. I know it's gonna sound crazy for a second, but I think it's something about the deepness and the resonance of your voice. When you're talking and you don't modulate, you start to I don't know how to describe it, but your voice starts to disappear, and then the minute you modulate, your voice can get a little higher, a little lower, it comes right back again. I wonder if you're speaking at a frequency that the phone gets confused.

Kent Schnakenberg 5:24
It's pretty low.

Scott Benner 5:25
Yeah, tell me when you're on the phone with people regularly. Do they ever ask you to repeat yourself? Oh, you

Kent Schnakenberg 5:30
know, I talk so fast most of the time, I think they just let me go. But do you want me to try the speaker phone? Would that maybe help? I'm fascinated

Scott Benner 5:37
by this because you got right to the part where you you'd gone on the ride, and you were on the bus coming back, and as you were talking, your voice just disappeared. And I realized now it's not the head that

Kent Schnakenberg 5:47
you had a last set, that last that happened in the last time we did this too, when you re listen to

Scott Benner 5:51
it, yeah, yeah, that's really interesting. So I don't know if the speaker phone would change anything. I actually I'm going to tell you something, what slow down a little bit, okay? And I wonder what that's going to change. And Lee, and the guy that's editing this, Rob, leave this all in. I think it's really interesting. I'm going to recap, just to make sure, okay, your niece gets type one. She's like, 14 years old. She's a full on adult now, right? You got you and your brother want to support you know, your family, right? You head out, you do this JD or F ride together. On the way back from the ride, you meet somebody on a bus. Start there, right?

Kent Schnakenberg 6:26
So after the ride, I got on the bus to go back to the airport, and I sat next to a young lady named Aaron, and I noticed a CGM on her arm. And so we started talking, and I asked her when she was diagnosed, I expect her say, you know, like six or eight or 10, because at that point I thought all people just it was all kids that got, you know, type one diabetes, right? And she said she was 42 and so it just amazed me. And she started talking, and then I she said, you know, really, realistically, half the people that get this disease every day are kids, and half of her young adults or adults, and so that led to a lot of interest in a great talk all the way back. And that's when I decided I wanted to do another ride. Just something inside of me told me to do another ride. So I signed up for the last ride of the year, which was in Tucson, Arizona, and I flew out there by myself. I didn't know anybody at all. I just got to meeting some people and stuff, and think it was 104 mile ride. And that night, on a Saturday night at the awards banquet, I was awarded this spirit jersey. And I really didn't even know what it meant at that point. And so they asked me to come up and talk. And I was up there speaking and to all these people. There's like 400 people in the room, and I noticed everybody's eyes were right on me. And I just, I just at the end of the at the end of my speech, I said, Okay, I'm doing all seven rides next year. It was like something came over me at that moment. I don't know if God came into me or what, and just, it was just a big deal at that point. And I decided just to go a full bore on this thing. And I got back to my room that night, and somebody has sent me a message on Facebook that showed a picture of a blue candle, and I didn't really know what a blue candle meant, but I've come to realize it's never good. And there was a 12 year old boy that had passed away that day, the same day I won this award from misdiagnosis of this disease, and that's when I decided I didn't know anything about the disease. And I thought, well, it's time to start spreading awareness. So that's when all this started coming to me, like on the plane ride home. You know, if I'm going to go to all the rides next year, I want to try to visit all 48 lower states, get a truck and logo it out, and have the symptoms on it and our information on it. And so I got that done, and the same girl named Aaron said I'd met, contacted her, and she hooked me up with this man named Matt Fisher, who had lived with type one his whole life. And he was a graphic artist, very talented guy, and so he, without even meeting him, helped me design the truck, just through emails and stuff and a guy at the local bike shop. And, you know, that's, that's kind of what started the truck. And that's when we decided to try to do, you know, go to all 50 states and visit all 50 states for over I had this, you know, this idea about trying to do 50 rides someday. It's kind of went from there.

Scott Benner 9:08
Kent, I want to stop you. First of all, the talking, speaking more slowly. Thing is the perfect fix for this. So, okay, yeah, so keep going the way you're going. You're doing great. I think it would be helpful for people to understand like, you just got this motivation. It's not like you. I mean, yes, your niece is a connection, but still, like, I think for most of us, like, I went and did the ride I supported my niece, like, I'm good, I'm going home now, something motivated you, and you said you don't know what you know, if it's God that put it in your ear or but, I mean, I want to understand more about you. Like, because, how old were you when that happened, when you, when you go on that first ride with your niece? How old are you 60 years old. 60 okay, and you're, were you retired? You were working?

Kent Schnakenberg 9:48
No, I'm still working part time at to this day. You know, it's still in the whole northeast Kansas thing, where my territories, I'm a salesman, you know, I'm just doing it part time now, but that's where. You know, started raising all the money, and that's where I learned about going, Yes, when I started my going to school program, that's when I started learning about Camp Discovery at all. Everything kind of ties into that, I

Scott Benner 10:10
guess. So what I'm saying is, you're 60 years old, you're still working. It's not like you're looking for something to do, right? You're not at home, like bored, right? Would you call this just a calling?

Kent Schnakenberg 10:18
No, I do. It was my mission. It was my moment in life. And that's why the last story I'll tell kind of explains that. But it was just that moment in life when God came into my soul, or whatever, and just said, you know, this is your deal. You can help these people.

Scott Benner 10:32
You can't really explain the motivation that you found for just you really got struck by something,

Kent Schnakenberg 10:37
yeah. I mean, I've always been a, you know, a generous person. I've always been a person that looked out to help other people, but this was just something that happened, looking in those 400 eyes, sets of eyes, and knowing all these people had a connection to type one diabetes, and they were like, looking at me like, we need your help, I guess is the way I would put it. I guess so,

Scott Benner 10:55
because you're kind of an outsider that just showed up and, I mean, you got the award because you have, I'm assuming you had so much enthusiasm. They were like, Who is this guy and why is he so excited about all this? Right? And especially without a direct connection. You have your own children. Yeah, I got two children, five grandchildren. Okay? So you have your own family. My point is, you have things you could be doing, you know, and you're giving a lot of time to something else. So along the way, over the last I mean, what year was this? It

Kent Schnakenberg 11:21
was 2014 is when I did the first ride that did the two rides, then, then when I committed to do the seven that started in 2015

Scott Benner 11:29
Okay, so you started doing this, literally, the year before I started making this podcast. I started making the podcast in 2015 Okay, so our timelines kind of match up that way. So at first you say there's, well, I guess the idea was there were seven JDRF rides around the country the next year, correct? Yes. Did you actually make it to all of them?

Kent Schnakenberg 11:48
Yeah, I did at one time. I pointed and did 25 in a row. I just finished my 49th and I'll do number 50 on Florida in December.

Scott Benner 11:56
Oh my gosh, you started. Oh, sorry, my phone's not muted. Hard. And had pancakes a little while ago. That's what that is. Okay, I guess you mentioned the truck earlier, but for people who don't know you, decided, like, I'm going to take a pickup truck and deck it out. And what did you end up calling your your ride team? You mean the truck? Yeah, the truck.

Kent Schnakenberg 12:16
Trucks called the t1 destroyer. We had a national contest, and people sent in names, and the person they wanted said you are the t1 destroyer. So that's what you need to call your truck

Scott Benner 12:25
awesome. And so I can picture in my head black with like, yellow graphics, right, correct, yep, yep. As a matter of fact, growing up, Arden slept in a T shirt that was yours for years, like it was one of her sleeping T shirts. And that's great. That's amazing. It's funny. I don't know if she knows what it is, but it's one of her she has a Dexcom sleeping t shirt, that one and another one, and they just went through the like, she was constantly using them. Nevertheless, like, so you got the truck because you're gonna go to your ideas. I'm gonna go to all these different places and correct, raise awareness. Like, that's really just your goal, right? Like, I just want to try to find people and teach them about type one diabetes,

Kent Schnakenberg 13:04
yeah, I mean, to stop senseless deaths from these kids that have passed away from being undiagnosed or misdiagnosed. And, you know, I've been in several homes, it's the worst thing I've done in all these years, is homes that have lost their kids, and listen to them and say, I wish I'd known I wish somebody would have told me. And just, I want to stop that. And, you know, raising awareness has obviously helped me raise so much money. It's been incredible. How much easier it is if you let people know what you're trying to raise money

Scott Benner 13:29
for. Well, it was my next question is that now you you're saying you're about to go on your 50th ride. Like, how does this like, how do you fund it? Like, are you independently wealthy? Or is there? Like, I mean, yeah,

Kent Schnakenberg 13:40
I work. You know, I've worked a long time and made a nice living, but we raised a lot of money. I mean, since we started all this, I mean, we probably raised between what we've given a JD ref, which is now called break through, T 1d they just rebranded last year. Yeah, and, you know, our team, snack strong Fund, which we can talk about, hopefully we've raised like, $1.2 million since we started. That's

Scott Benner 14:01
insane. Ken, that's really wonderful. And so some of that money gets donated off and some of it funds your traveling and your awareness raising. Today's episode is brought to you by Omnipod. It might sound crazy to say, but Summertime is right around the corner. That means more swimming, sports activities, vacations. And you know what's a great feeling, being able to stay connected to automated insulin delivery while doing it all. Omnipod five is the only tube free automated insulin delivery system in the US, and because it's tube free and waterproof, it goes everywhere you do, in the pool, in the ocean or on the soccer field. Unlike traditional insulin pumps, you never have to disconnect from Omnipod five for daily activities, which means you never have to take a break from automated insulin delivery ready to go tube free. Request your free Omnipod five Starter Kit today at omnipod.com/juicebox Terms and Conditions apply and. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox type that link into your browser, or go to Juicebox podcast.com and click on the image of Omnipod right at the bottom. There's also a link right in the show notes of your podcast player. I have always disliked ordering diabetes supplies. I'm guessing you have as well. It hasn't been a problem for us for the last few years, though, because we began using us Med, you can too us med.com/juicebox, or call 888-721-1514, to get your free benefits. Check us med has served over 1 million people living with diabetes since 1996 they carry everything you need, from CGM to insulin pumps and diabetes testing supplies and more. I'm talking about all the good ones, all your favorites, libre three, Dexcom g7 and pumps like Omnipod five, Omnipod dash tandem, and most recently, the eyelet pump from beta bionics, the stuff you're looking for, they have it at us. Med, 888-721-1514, or go to us. Med.com/juicebox, to get started now use my link to support the podcast. That's us. Med.com/juicebox, or call 888-721-1514,

Kent Schnakenberg 16:21
no. The funny travel and everything, my wife and I find ourselves. Oh, I mean, it's all we've always just paid for all that ourselves now. Oh, my God, no, we Yeah, and the T shirts. Obviously, we've given out a lot of T shirts over the years. I mean, we just celebrated with the company that does our T shirts. They've just printed their 26,000 T shirts. So we've given out over 26,000 T shirts since we started it, and we funded most of that for a long time. But the last few years, we've had some people step up say, hey, we want to help you pay for the T shirts when you come to our school, that type of thing. So 26,000 T shirts, yeah, and all of them have our team snacks, and they have the symptoms of type one on the back, and they're the key to this whole thing about creating this whole army of kids, you know, to help us all over the country. Actually, we've sent these shirts all over the world, and people wear them. They love to wear them. And you know that my theory is, if they're standing there at McDonald's, in line or on vacation or whatever, because you see these shirts everywhere, all over northeast Kansas and around the country, you know people are going to read some of those symptoms, and hopefully they'll remember the top four or five of them, and then they'll remember that if somebody in their family says something, or, you know about their kids or their granddaughter or whatever, and you know, help them say, and help them know to say you need to get to the hospital right now and do the blood check. You just need to get to the hospital right now. You can't wait.

Scott Benner 17:35
So the simplicity of your motivation really is that you have that experience in front of those 400 people, and then that evening, someone tells you about a young child who passed away from not getting diagnosed.

Kent Schnakenberg 17:46
Yeah, somebody sent me the message. You know, since then, it's just that's, I've just always been very driven, you know, I'm a salesman by trade. You know, selling and fundraising and all this is kind of all the same thing. You just, you have to let people know what you're fundraising for. You let have to let people know that you're serious. You know, when they see my truck and they, you know, they they see me go into a school, you know, people just they realize this guy is serious when, I mean, nothing is more exciting to me than walking into a school 400 kids or 600 kids or 800 kids, whatever it is. I mean, I've done like 75 of these school visits and assemblies over these years, and they all have a bright yellow temp snack shirt on. And right away, they're bought in because they know this guy's serious. He's giving us a t shirt. We need to listen. Yeah,

Scott Benner 18:31
you know, I just That's simple. You're not just wandering and talking. You're saying there's clearly a structure around what you're doing. And when you show that to people, they think, Oh, this is a real thing. And let me take a minute here to find out, how did you start that? So you have a school awareness program where you you go around and speak even, how does that begin? Like, how do you where does that idea come from? And then how do you grow it?

Kent Schnakenberg 18:52
Well, I mean, through my territory, which is northeast Kansas, you know, that's where I've done a lot of these. Obviously, here in accord, I've done them all over the country now, as I'm traveling and stuff, but I just decided one day, like I said, that if I'm going to have, you know, kids to help me, I could create an army of people out there spreading awareness. Because you don't see anything on TV type one diabetes, except now some CGM commercials. Yeah, you don't ever see anybody talking about symptoms. It's not. National organizations don't talk as much about awareness as I wish they did. I mean, they're, they're great at raising money and doing the research, but I just thought, I'm just going to try to do this on a grassroots level. And it's worked, and it continues to work, and it's the proven, you know, it's a proven mission. It's a proven theory that by doing that, it's helped us raise all this money, and this money has done so much good. But, you know, I just when I started going to the schools, the first thing I ever did it was in 2015 I one of the I was reading a book to the second graders up in nemas Central elementary school, because the teachers asked me to come in and read. And I'd given all the kids a t shirt because they knew they'd seen my truck. And I saw the teachers in the back room, you know, talking, back to the room, talking, and they came up and said, We got an ID for. Fundraiser. And so before I knew it, we were going to do a bike ride with the second graders from that school and the Catholic school. So if you think, have you ever done anything crazy in your life, try taking 75 second graders on a four mile bike ride. And it was just the coolest thing. We got there in the morning at the elementary school, and everybody was wearing their shirts, and they all had their bikes. I think four or five kids didn't have bikes. And then around the corner, here comes the kids from the other school, and they're peddling their little bikes. And the priests from this from the school came and rode with us. And it was four laps around, you know, this school, and each lap was about a mile in the first lap, you know, I said, Okay, everybody behind the big guy. Everybody stay behind me. Light up. I mean, we had the teachers. We had people staggered through there, yeah, went all around the first time, and it worked out pretty good. And all sudden, kids started going faster and faster. They wanted to pass me. And we got back around halfway the second time. I heard man down in the back, and I looked back, and there was a pile of them back there. And the teachers got, you know, to them real quick, and they I went back there. I was all worried, and they said, You can't hurt a second grader. You're fine. So we rode one more lap, and then by the fourth lap, I was so nervous, there was some kids that were running the whole time. I said, Let's just all park our bikes and walk. I said, nothing could go wrong, you know. So we all held hands, and we started around this big one mile block area, and I looked over the tree, and there's two kids in a tree and to kids in the streets. And, I mean, it was one of the craziest things I've ever done, but at the end of it, they gave me a check for like, $3,300 they had raised just through that school that day within what a huge surprise. And and that's when I decided to start going to schools. And I just, every chance I get, I go to schools and talk. It's amazing.

Scott Benner 21:40
Yeah, so when you speak to them, what do you give them, like signs and symptoms to look for? Or is it more about the opportunity to make their parents aware and the teachers aware? What is it? What's your goal when you're doing that?

Kent Schnakenberg 21:52
You know, it's about a 30 to 45 minute thing, depending on, you know, how big the school is and stuff. But we just start talking about team snack and why I started. And, you know, then we get into what is type one diabetes. You know, I explained to them that it's an autoimmune disease, and anybody can get it in. Your classmates that have this disease didn't do anything wrong. It's not what they eat, it's not how much they exercise, and it's not contagious, you know, just try to make everybody feel more comfortable. Yeah. And then, you know, we talked a little bit about bike safety. But the highlight of the whole thing is when I give the kids that play with type one a chance to come up and speak. And you know, in some schools there might be one kid, or some schools there might be 12 kids. And you know, the smallest school I've ever done is like 178 kids K through 12. And the largest I've ever done was 1100 high school kids in Paintsville, Kentucky. Every one is different. And, you know, they just, it's amazing how brave these kids are when they get up and talk. And it just empowers them. For the first time in their life, they can go up there, and we can talk about the CGM insulin pups, and why they're wearing these things on their body, and why they get to go to the school nurse more often. It's just very empowering. And some of the things they say and some of the things that come out of that, or things, you know, I'll always remember, there was this one little girl at a very small school I went to, and it's K through 12, and there was a third grader there that had been just diagnosed to her parents, got a hold of me and asked me if I come to a school assembly, which I always say, yes, if I can. And we got there, and the principal said, This is great what you're here for, but I want you to let you know we have a sixth grade girl that has type one also, but she never wants to be recognized. She doesn't want to talk about it, and don't ask if there's anybody else, I mean, and I would never do that. And if kids don't want to come up, I never make them. But we got, you know, through the through this thing, and towards the end of the assembly, and this little girl and her parents were up there speaking, and they were just so, so great. And she went to sit down, and all of a sudden I see this girl stand up, and she just walks right out of her out of the stands, and right up to me, and she says, I'd really need to say something. And right then I thought, well, this is that other girl, yeah. And she took that microphone from me, and she walked over in front of the sixth graders, and she just said, you know, I want you to know the reason I don't wear a two piece swimming suit or tank tops because I'm embarrassed with all the spots on my body and all the bruises from having to give myself shots. But I have to have those shots to live every day, she walked back over to me and handed me the microphone, and she said, thank you. And as she was going, I'll never forget, the whole place stood up and give her a standing ovation. And the next day, her mom called me and said, You know, I don't know what you did or who you are, but you changed my school that day and took her bag and showed everybody what was going on. And there's just so many things that happen like that. You know, over the years, these kids, they're just it gives them a chance to not have to hide, not to have to hide it anymore, right? That's the whole gist of the school program, and it just continues to grow. No?

Scott Benner 24:50
I mean, if you didn't do anything else, just that story alone is, is probably worth the whole thing, right?

Kent Schnakenberg 24:56
Yeah, yeah. I just even, even when we're traveling across. Of the country, and I'm speaking in rhetoric clubs or, you know, I get to stay in some people's houses now, because I've met them at rides and stuff. You know, they're just, we became, I became good friends with so many people through JDRF. And it's pretty it's pretty amazing. You know, when the JDRF rides, I've done all these rides now, and I've won that spirit Jersey, and then I won two green jerseys, which is, man, I've raised the most at that particular ride in all you know, last year, December, I think it was my 47th ride, but that was awarded the rose jersey. And the rose jersey is something that I always wanted to win. It's the it's a jersey that's given out to a person that doesn't have type one diabetes, but has done so much to help people that live with type one diabetes spread awareness and raising money. And Rose was a lady that passed away from the horrible disease that was writing for her daughter. The Rose jersey was just because she made everybody promise to keep the journey going after she was gone. You know, last year in Amelia Island, this is how this whole thing kind of keeps coming back around. I was in the morning. I was dressing. I walked downstairs and had my road jersey on. This young man walks up to me, and he goes, Mister snacker, you're not going to remember this, but in 2015 you had a booth set up in Wichita, Kansas at the JD ref walk, and you had your bike there and your truck. And I came up, and I was just so small, and I just looked at you, and I said, Someday I want to do a JD ride like, if you ever do one, I promise I'll be there. And he was, he was there at a million Island, you know, 10 years later. And he said, you know, you just, you kept your promise. Things like that to just, you know, I get tired, you know, I'm 70 years old now. I'll be 71 in January, but six like that just motivate me to continue on, and I can't keep doing it the same pace. I just never want to stop. I never want to quit on these kids, because I know today, tomorrow, the next day, there's going to be another 250 people that are going to be diagnosed, and most of them don't know the symptoms, and they need to know that. They just need to know that they just walking into people's homes, speaking at a couple funerals I have, it's just no fun, and they're just senseless deaths. And I try to get national organizations to buy more into it and talk about awareness, put the symptoms on the back of their shirts and stuff. But at this point, I still haven't been successful with that, so I'll just keep doing it myself and with my family. And my wife is an unbelievable partner and all this, she's, she's just so great, and it's let me do so many things. I mean, you got to realize I've probably been gone 250 more nights away from home, traveling, just doing this, and she's just all about it, and she knows I'm doing good things, and she loves helping people like I do. Yeah, well, Ken,

Scott Benner 27:33
how long you've been married? 45 years? Yeah, she probably thrilled me at least. I gotta be honest with you.

Kent Schnakenberg 27:39
Well, I mean, can you imagine, once, like being married to me, it's not always fun, but, but but she's just, you know, and our grandkids, yeah, they love it. And it's, it takes some, you know, not very many people would be able to do that. It takes somebody strong like that. And, you know, she's done like, six or seven rides herself, and she actually did her first 100 mile ride a few years ago on the cross. And I was so proud of her. She's always there to support

Scott Benner 28:00
me. Do you ever have the feeling that you've given something away in your own life, for these other for these strangers, and that it's a thing you can't get back? I mean, if you ever missed time with your own family over this or and how do you handle that?

Kent Schnakenberg 28:11
I mean, I obviously missed some things I probably shouldn't have, but I think my family, I don't think that I've ever given anything away, and I think my family understands how important this is. It'd be one thing if I was just out there golfing or traveling, you know, going to football games with guys. But, and, you know, they have a lot of connections now with these families and stuff, and they know that this is my mission, and they're part of this mission. They're, we call it team snack strong, and we're all team snack and, you know, it's just, it's part of our family name, and it's our nickname, and it's just something we continue to do. So I wouldn't say that I regret anything at this point in my life. I may look back on that someday, but we've made life long friends all over the United States, and we connect, stay connected, with these people. And you know, it's just it's very seldom that, you know, within a week or I'm not getting two or three messages, you know, would you please send us a t shirt? And I always try to send a note with it, and I'm always at the post office sending out shirts. And, yeah, you know, just continue to go to school. So I have five schools up in northeast Kansas that their eighth grade classes every year as part of their class. And I do this at Emporia State University too, with the class that I go in and talk and I hand out T shirts, and I go back several times a year. And you know, that's culminated into we have our own northeast Kansas takes team snack, Diabetes Awareness Walk for the last several years. And each year that thing raises 10 to $15,000 and we have three or 400

Scott Benner 29:32
people show up. I asked you can't because yesterday, I mean, it's a good example, like, I'm gonna go back maybe nine months ago, I interviewed this person. She's just type one. She was young girl, and as we were talking, I realized that she was an American Sign Language interpreter. And I said, Wouldn't it be interesting if I took one of the series from the podcast, you know, the one for newly diagnosed people, bold beginnings? And what if I got it translated into. To into American Sign Language. I paid somebody to stand in front of a camera and translate the entire thing, which is a huge undertaking, right? And I first thought like, well, maybe I could get a sponsor to pay for that. Then I realized, this is going to help a handful of people, and it's going to be really valuable for the people it finds, but it's not going to find, I don't imagine 1000s of people, right? It's going to find 10s of people, or maybe 100 people. It's going to be really helpful for those people, but nobody's going to want to put money down. So I didn't even bother asking. I said to the girl afterwards, I was like, Michaela, what would it cost me to have you do that? And she gave me a very fair number, and I reached into my pocket, and I paid her, right? And it took probably months and months and months for us to get it together, and for her to, like, figure out how best to do it. And also, there's 26 episodes of this thing, and just recently she finished. It's awesome, right? And as I was paying her account, I thought, this is not enough money for the amount of work she put into this. I'm not paying her enough. And I felt bad about that. And then I had the videos, but I didn't have the time to put them together. I had to make a website for them. I had to get them onto YouTube. I guess a lot of back end work that's kind of boring. But then maybe four or five days ago, someone on the Facebook group asked, Does anyone know where somebody who needs ASL can get diabetes information? And I thought, huh, I have that on my hard drive, and what a great opportunity. So I spent the last few days making a website, uploading stuff like, you know, making sure everything on the back end was done. I got up yesterday, I recorded at 9am at 10am I thought to make myself breakfast, but started to work on the ASL stuff instead. And then I finished it last night at 1130 and I put it online, and I put a post up, and I was like, hey, here you guys go. It's, you know, I was really giving it to this one person. I was like, here, this is for you, for your brother. Wow. And I don't feel like I wasted my day, but there are a lot of things I meant to do yesterday, and one of them would have been like, exercising. And, you know, on the very simple and basic level, there's I skipped my workout yesterday. I didn't do a lot of things yesterday, and instead, I worked on this thing for the entire time. I was wondering what your answer was, because if somebody asked me, Hey, you feel like you gave your whole day away yesterday for for nothing, I would say, No, I don't think so at all. Like it feels really valuable to me. I don't know a lot of people who get to go to work and feel that way, I guess is my

Kent Schnakenberg 32:23
point, no, every day is a new opportunity, you know, to help somebody, whether it's with type one diabetes or anything. And what you did there was so commendable, because, you know, you didn't just help one person, you helped the family, you helped other families. And you really can't waste your day. I mean, you can exercise later today. You can exercise tomorrow. I mean, I could ride my bike when you give something to somebody that needs you and doesn't have what you have to give, then it's well worth it. And that's, that's kind of way I feel

Scott Benner 32:48
I've heard you. It was really hard, because your voice is very deep, but, like, I've heard you be emotional twice while we're talking, right? And the little girl saying to you, like, Can I have the microphone? I have something I need to say? Like that made me cry. I got emotional when you said that her words. It is because it's the bigger picture. It's like, she's there, she's she's got some energy, and she's like, I've been holding this thing inside. I'm miserable holding this thing inside. Yeah, and I need to get rid of it. If you can be a little part of helping somebody do something like that. I really think it reverberates around the world. I'm sitting here thinking about these kids who sat through your program at school and will 10 years later be in college, and some kids going to get sick, and they're going to think like, oh, that's probably diabetes, and maybe help that person and that thing like that on that first night that you wanted to do, yeah, you'll do it so many times in your life and beyond your life, you won't even, you'll never know how many people you touched. I don't believe well, you know, I

Kent Schnakenberg 33:46
got a card once a few years ago from a second grade teacher that I had been at their school two years before, and she said, You know, I listened to what you had to say normally during assemblies. You know, I'm creating papers or whatever. But she said, you know, you gave us all these shirts, and you were very interesting to listen to. And I listened to everything, you said. She said, two years later, my son started showing the symptoms of type one, and so right away, we got him, you know, to the hospital, and his blood sugar was like six or 700 and she goes, I know in my heart You saved my son's life.

Scott Benner 34:16
Well, I mean, at the very least, you saved him from like, a terrible bout with DKA and all the things that might come with it, and her having to feel like she missed it, like I talk to people every day who, you know, carry a terrible burden around with themselves, like because they missed something, and their children didn't pass even they went through a thing that they just wished terribly they would have understood better, so that they didn't have to have this experience. Yeah, no. I mean, Ken, it's, it's, it really is awesome. What you're doing.

Kent Schnakenberg 34:43
Well, you know when we're like when I was at diabetes camp last year, and, you know, I'd want to talk a little bit more about that, maybe in a minute. But please, here they have, they have doctors and nurses there. Obviously, from this one is close to Wichita, Kansas, you know, I walked, I went in there, and they just said, you just need to know. That you have, you're making it possible now for kids to just walk into the room and just say, with their parents say, I need a blood sugar test. She goes, the worst thing is, when we get a type one child that's, you know, in an ambulance, or worse yet, on a helicopter. She said, there's just so many kids that could benefit from these programs. And so that's another reason to keep motivated, because just think of all the kids all over the world that hold this inside, like you said, and don't want to talk about it, or scared to talk about it. It's only because nobody's giving them a chance. Yeah, you know that's I just want to give them a chance to open up and let the other kids around them know. You know, it's not weird for them to be wearing these things on their arms, at their legs. They're things that keep them alive. They have to have them to keep alive every day. There's a reason they carry Skittles. It's not because they love candy. It keeps it's a chance to keep them alive every day, and that's why we'll continue to do even if I can't do the rides and travel around the country as much. I'll continue to talk to groups, and I'll continue to help people in this area and all over the state of Kansas and go to as many schools as I can. I mean, you know, we have a team snack strong fund. We actually started right after I talked to you. I think even I mentioned that we were getting ready to start it, and it's under the Emporia Community Foundation. And so for any child that lives, you know, in the seven county area with type one diabetes, you know, each year, they can get $1,500 a year from us, you know, for scholarships, and for, excuse me, $1,500 a year from us to help pay expenses of the disease. And there's another foundation that's tacked on another $1,000 to that for the same kid, you know, also, plus that if they want to go to Camp Discovery, you know, we're going to send them on a full ride scholarship. And I think the average price now to camps like $1,000 and since we started, I think the first year, we did 1010, kids, it was in Dexcom City, Kansas at that point, and it was 73 miles from your side, ride my bike up there with a friend early in the morning to get there, you know, around noon, and the kids would be waiting for me. And so now, every year when we go to camp, they have a team snack day, and it's on Wednesday East Lee, and we can't, you know, there's 100 kids there. It's unbelievable experience. I don't know if your daughter's ever gone, but we give all the kids a shirt, and I get her down there and talk. And I think we've given out now 175 scholarships since we started. And last year we sent 36 kids, and this year we're going to send 40 more. And it's just the camps are one of the best thing that I ever hooked up with. I mean, it's just so empowering. They get lifelong friends, they get a talk, and you know, when they have their meals, they're all together in this big room, and they get up in each cab and talks about who changed their pump and who did this, and it's just, it's so cool, and they come out of there, and their lives are changed forever. And we want to definitely continue that

Scott Benner 37:28
program. Yeah, for sure. So this year, I had the director of Camp Sweeney on the podcast, and while he was on, he said, I'd like to give away, you know, to the listeners, I'd like to give away a spot at Camp Sweeney and camp sweet, it's pricey. I think it's over. I literally think it's like $4,000 right? And it's a three week camp. They go for three weeks. Oh, wow. And I said that that'd be great, you know, I'll give it away. We got off, got off the call, and I said, Let me, let me reach out to a sponsor and see if I can get somebody to, like you give one away, and we can get a sponsor to give one away, right? And I think I'm pretty sure us med did it. So it's one of my sponsors. So we gave way too. And then, you know, they were so excited about it, and it did good buzz for the for the camps, they said, Listen, we have benefactor that would like to give away another one. I said, let me go ask another sponsor. And I got, I got Omnipod to give away another one. And then before I knew it, the 2025 was, you know, Camp time was coming up, and I think we sent, like, I've lost count. I think we it was six or eight kids we sent to camp, wow, just random drawings, like people just sent in, like, here's why I want my kid to come. I randomly picked names, and the kids went off. And I got a video a month or two ago, and I was like, What is this like? It was, I was tagged on Instagram, and I jumped and looked at it, and it's just this giant group of children, and this one little kid up front, and he's like, hey, you know, thank you so much to the Juicebox podcast for sending me to camp. I'm having such a great time. And like, just countless kids behind him, like screaming, thank you. And I sat there, and I thought my whole life should be sending kids to camp like I should, you know, I should. I should quit everything else I'm doing and try to find a way to send more kids. What a lovely experience. It was new for me, yeah. And then I just recently had one of the kids on to talk about it, and and he had such a great time and experience, just like you you described. So I can't imagine how it must feel to send 40 kids.

Kent Schnakenberg 39:23
That's it. Well, it's empowering. And, you know, it's we try to, obviously, we pick kids from importing area first, and then we pick kids in northeast Kansas, because that's where we still continue to raise so much of our money, and so many of the schools I go to and stuff. And then we, but we've sent kids from all over Kansas, and the camp ADA has been great to work with this. I mean, Camp Discovery is great and, you know, give us an opportunity to do this scholarship program, and I think it's helped fill all their beds, and now they have a waiting list, and it's, I promote that camp anytime I get a chance to because, and I'm sure that we sent a girl in Arizona to. Camp out in Arizona. I send a girl in Colorado to camp in Colorado, just, I mean, I walk in a bike store last year in Green Valley, Arizona. We go out there and visit friends. You know, the guy out in the under the bike store saw my truck, and he goes, You know, my daughter was just diagnosed. And I said, Well, can I meet her? And he called her home. She came down there, and before I knew it, gave her T shirts and talked to her about what we did. I said, you've ever been to camp? And she goes? No. Said, Well, if you want to go, you know, help pay for it. And so a few days later, they got a hold of me, and she just got back from camp, and she had an unbelievable experience. It's only because I needed to fix a flat on my tire on my bike. I mean, it's just, yeah, it's not very many days go by where something cool doesn't happen to me, but I try to reach out all the time. You know, I've got my shirts, I got the truck, so I'm always visible, but I just don't want to miss an opportunity if I can to meet a kid.

Scott Benner 40:47
I'm jealous that you get to do it in person, because I think I have your experiences, and I might have them with more frequency, but mine are all virtual, you know, for the most part. Yeah, you

Kent Schnakenberg 40:59
know, look how many people you're reaching. I mean, you're, I have no idea how many subscribers yet, but it's got to be a lot. Because, like I said, that first year you were getting started, I was getting started 10 years ago, and just people continue. It was last year. Somebody reached out and Ryan walked up said, I remember you from the Juicebox podcast, and thank you for everything you do. I just, I mean, you're doing what you know, you're doing what you were meant to do. And I think I'm doing what I was meant to do. I mean, it takes I agree all sides to do that, and we have so much support from our community and from schools in this area and from people all over the country. I mean, when we raise money for it's called Match Day at Emporia Community Foundation. It's in November, and we started like, I think it's six years ago, with this match day thing. And each year we've led, you know, you know, each year it continued to grow. And last year, you know, we received a check for $106,000 and that money, you know, that money, helped so much. And I think since we started this with them, we raised over 600,000 just for our foundation, and, you know, for our fund there. And but each year we're paying out, you know, 30 to 40 to $50,000 you know, two kids with the financial aid and going to camp and stuff. So we need to continue to work hard to raise money, because I really want to have one that is a legacy fund when I'm gone, and to continue to do this program. And you know, not only help kids with the expenses necessary, but you know, continue to raise awareness with what we do. And you know, I don't know if I told you this, but now I have two team snack trucks. And you know, the first one is a 2014 the one you had the picture of took all over the country, and now it's got 430,000 miles on it. So two years ago, three years ago, in case, this one comes out of stuff, so about a 2022 and the same lady that logoed out the first one had all the designs and logo. Get out this one just the same. So I've got two of them sitting at my house. I've been driving the newer one to the longer rides like Wisconsin and Florida and some of those. But otherwise I just drive my old one. Everybody at the Ford dealership here, and everybody all over the data saying, what's your goal? And I said, I want to get to half a million bottles. You know, I want Ford Motor Company someday to recognize this and do a national commercial about this guy that's driving all over the country in a Ford f1 50, you know, to raise awareness, saving lives, raising money. And I know that Ford's a big sponsor of breakthrough T 1d and that hasn't happened yet, but I always hold out

Scott Benner 43:13
hope. Yeah, that's really wonderful. You know, you said something a second ago that really, because I think about it too, about like, keeping it going, like, when you're talking about all these people that you're helping and, I mean, would you just say, like, 30 to $50,000 of just, like, financial aid to people who are, you know, just struggling to pay for stuff? And you think, Well, when I stop doing this, like, I mean, it's not a giant organization, Ken, right? It's you. So, like, you get too old or too sick or too tired or whatever. Like, what happens to all of it? Like, how are you trying to I know you're planning for it, but what is it you're doing to try to keep that alive?

Kent Schnakenberg 43:47
Well, I'll be setting up soon a legacy fund with the Community Foundation to where, you know, when you and I'm trying to get it to a certain amount of money, to where they manage, you know, they've managed the money, and it has a very good return on the investment. Through this Community Foundation, I think there's like 300 funds. 300 funds. We're very lucky and important to have that. And you know, the Legacy Fund means, once I'm gone, that they'll continue as they're boarding, you know, their directors to manage the fund, and, you know, and still give out the money. And you know, it probably will lessen, as far as the camp thing, as far as, you know, kids from around the state that are going to camp. But also, I have other people now that are trying to figure ways to send more kids to camp because they didn't realize what the need was, you know, people from other places. And I've had parents that reach out and said, you know, this year, we could just pay your own way once you send another child this year. And so there's a lot of people on board. We won't let it die. It'll continue to grow in some fashion. And, you know, help as many people as we can.

Scott Benner 44:39
Somebody has to be the center of it, the beating heart, because that's you right now. So someone along the way is gonna have to pick the mantle up and decide that they want to carry it the way you did. Yeah.

Kent Schnakenberg 44:47
But I'm telling you this Community Foundation, the two ladies there, I mean, they're all in on this, and, you know, they do these legacy funds, and they love what we do, and we love what they do, and so it'll it'll continue on. But I'm also hoping for. A long time down the road too.

Scott Benner 45:01
It's like, I ain't looking to stop now.

Kent Schnakenberg 45:03
I've had had some health issues the last two years. Obviously, that's going to limit me from, you know, doing as much in the future, but I can still do a lot. I mean, I was doing a lot, a lot for a while, and this, you know, but two years ago, when things were just really going strong, I was doing a ride in La Crosse, Wisconsin, you know, I had noticed that, you know, had some issues with going up steep stairs and stuff. But I just figured that was from being 70, you know, or 68 I guess

Scott Benner 45:31
at that time, what ended up being the problem. Well, anyway, I

Kent Schnakenberg 45:35
did 40 mile ride that day. But, you know, I felt pretty good, but I'd already, I tried to go up this bluff. Everybody just kind of does in La Crosse. It's a really cool area. It's called grandpa's bluff, I believe. And I got a couple 100 yards up there, and my heart just started pounding, and I thought, This isn't right. So I came back down. And luckily, I had had a physical setup for that. You know, I got back on Sunday, I had a physical. On Monday, my yearly physical, they'd already set up a stress test, because it's been 10 years since I've done one. And, you know, I went physical, and everything was fine. I needed a stress test the next day, give me the shot to put the stuff inside my veins, and they take the pictures, and I go back in there and sit down and, you know, they're getting ready to hook me up to all these, you know, to the monitors and stuff, and get on the treadmill. And the lady looks at me, she goes, you know, you got afib? I said, Man, I don't even know what AFib is. I've just heard it on the radio. And she goes, Well, it's not good. Then I guess the picture started coming back in, and they were just staring at the screen. And when they're both looking at the screen and not talking to me, I know it's not good. And so they actually didn't even let me get on the treadmill. And they called, you know, the cardiologist here in Emporia. We have new Newman Regional Health, which we're blessed to have, and they have a full time cardiologist and department in CAS lab. And you know, within a half hour, he was down there, and he drew a picture my heart, and he goes, Ken, you have three blockages in your heart. One of them's 80% one of them is 90% one was 95% at that point, my wife wasn't even there. My wife was in Kansas City, because I she just, you know, I just told her, I'm just going to go do the stress test. And so she said, you might want to call your wife. He said, within about two hours, we're going to have you in surgery. And I looked at my So, do I need to get a second opinion? Do I need to do anything else? I mean, you know, your mind is just racing at that point, because this all came out of nowhere, basically. And he said, you know, we can fix this here. Count, and if it's something I can't fix, I'll send you on to Topeka, to Kansas City. And just the way he said it, I trusted it very much. And they got me ready. It took me up to the surgery, and the Cast team was there, and they were unbelievable. It was just a great experience for whatever an experience could be like that. But I had three stints put in, get down to recovery, and you know, your heart's still in afib, and so that's something I've been dealing with and will continue to deal with. I have a double procedure in January that hopefully will take care of that, get me off some of these blood thinners and stuff, because that's limited me in the riding by myself and doing a lot of things, but, but I've been able to continue on. I mean, I did three rides last year, and I've done two this year. Gonna do the one in Ford in December before my right, you know, before my surgery. So I'm just I was very lucky that I actually tried to write up that bluff, which made me decide I gotta go ahead through this stress test, people have been very understanding, and, you know, sending me a lot of Cartage and well wishes, it just slowed me down. It hasn't stopped me. But I don't believe you'll be seeing me do any more 100 mile bike rides anywhere.

Scott Benner 48:18
Well, can I ask? Because I just had a guy on that was talking about heart issues, but, yeah, correct. You're not, I'm guessing you're not a smoker,

Kent Schnakenberg 48:26
right? No, no, just my dad had heart issues. So it's like, my family,

Scott Benner 48:30
familial, okay, I was gonna say because, I mean, you're, you're as active as anybody could be, yeah, moving constantly and and the rides and everything else, right?

Kent Schnakenberg 48:40
Yeah, it just wasn't, you know, things just happen to people. Yeah, when I was 60, I really felt 25 and now that I'm 70, I kind of sometimes feel 70, but most of them really feel like to get in front of kids and go to schools and talk. I'm back in my 40s and 50s, but I've got a lot of good years left. I, you know, ahead of me. I hope. And for as many times, you know, as much as I can do this. I want to keep going. I want to keep doing this. I'll tell these kids all the time, you know, I wake up every day trying to think of things to make your life better, and that's kind of what I try to do. And I said, I won't quit as long as I'm physically able to. And they, they believe that, and I believe

Scott Benner 49:14
that. I tell people all the time when they they thank me for the podcast. I was like, I really have to thank you, because the way they support it and listen to it and keep the you said, you don't know how many people have heard it, and I almost hesitated to tell you at the time, but I'm getting ready to celebrate 20 million downloads, like total downloads and a lot, you know, yeah, and that's because people, they listen to it, they enjoy it enough to share it with somebody else, that keeps it going. And maybe one of the unforeseen things that they don't see that I hear when I'm talking to you is that allows me to get up in the morning and think about like, I wonder what people need. Like, you know, I've heard you say a couple of times, like, I can't get big organizations to put signs and symptoms on their T shirts or their stuff. And I mean, I probably understand that. It's it probably feels like a bummer. To them, and that's not what how they want to present. They want everything to be upbeat. And we're working towards something that kind of feeling all the time. But you know, I brought that ASL thing up to you earlier, like no one else is doing that, Ken, like no one's going to put the time or the effort or the money that it takes into creating helpful start out information for people with type one diabetes who are deaf or hard of hearing, they're going to tell you, like, there's just not enough of them. Like the juice isn't going to be worth the squeeze. Like the amount of effort they're going to put into it, they're not going to see the return, especially in this digital age where people want to see 10s of 1000s of clicks on something, they want to see hundreds of 1000s of downloads. They're not looking for you to reach five people anymore. You try to show something to them and say, like, try to imagine this. Like, I don't think it's hard to get them to imagine it, but I think that now that I've done it, I don't think it'll be as difficult to reach out to them and say, hey, look, here's how much money it would take to, you know, fund this to do for this kind of information or this, like, and now there's a place, and you can see people getting to it and using it. You can get them a little more excited to keep going. But, yeah, I hear all your frustration. Like, I mean, what a no brainer for Ford to send somebody with a camera out to talk to you for an hour and put something or just

Kent Schnakenberg 51:15
follow me, you know, send somebody with me for a day and, you know, I would think they'd sell so many more f1 50 drugs to people that live with type one diabetes, if they saw this truck going up, doing all these things. And it's just sometimes the big organizations are real busy. And I'm, you know, JDRF, which is now breakthrough in the American Diabetes Association, have been nothing but great parts of my life. I just thought, if they just do simply print the T shirts, you know, with the symptoms on the back, it's going to help them raise more money. And that's the hardest thing, is to make them understand that the more people know about this, right, the more people are going to donate money. And the only way to tell them to do that is by telling them and along the way, you're going to save lives. I mean, you know, you said something about only reaching so many people with, you know, with the program you were on recently, but if I you know, if you could say five kids a year a year. I mean, what's what? What would be the price on that? Yeah, because you know that a lot of people are diagnosed today, and most of them don't know it's coming, and some of them are going to end up in ambulances and some of them on helicopters, and they just need to know. I mean, you can't stop the disease, but you can stop people from dying from senseless deaths and being undiagnosed or misdiagnosed. You got to

Scott Benner 52:22
tell people, using Ford as an example, they would get great social media out of it, and it wouldn't cost them anything. And like you said, a good video of a 12 year old truck chugging along with 400,000 miles on it, which you would think is, you know, good for sales I haven't done. I'm not going to ask you the number, but 26,000 T shirts, even if you're paying three, four bucks a piece for them, means you've spent $100,000 in T shirts. That's a lot of effort from you. Like, if that's the only thing you had ever done that would have been really impressive, you know, I'm saying,

Kent Schnakenberg 52:52
Yeah, well, I got three orders on my desk right now. One, I'm going to speak to the Girl Scout troop, and I just sent 99 shirts to a preschool that I want to go speak at like I said, this guy, his name is Tom wrong, and it's one 800 T shirts. Is this company in Dubuque, Iowan? I mean, it's crazy. I was at a JDRF ride in 2016 in La Crosse, Wisconsin, sitting there in a in a on Saturday night in a bar with a bunch of crazy people from Iowa, which are great people we've met over the years. And he walks up to me, goes, Hannah, I see you guys do t shirts. And he said, both my brothers are type one diabetic, and I own one of the largest t shirt companies in the Midwest. I want to be your guy. Also, I'm too cheaper than anybody. And since then, it's just been a it's perfect relationship. I mean, I they do such great work. They're quality. Yeah, I call them, I send them the order they send them right to the school. I mean, it's just that when we went by there last week, you know, they're all wearing team snack shirts, there's 30 some employees, and they were so excited to hit that number of T shirts. And we just, I got to talk to him a little bit and take pictures and and nothing probably would have happened if I wouldn't have been earning team snack shirt in that bar at that time. So, yeah, I just feel like I've been put in certain places and certain things over all these years to make all this grow like this and come together. And, you know, just have relationships with the company like that, and have relationships with, you know, Matt Fisher, who helped me design my truck, and now he's got his own ride team called Team fish, and we're really close, and we ride, and he's done so much for the breakthrough RIDE program, and we're just great friends. And I just, I want to keep going for things like that, because I know there's people I could still reach every day, and there's people that hopefully will hear this podcast and understand that, you know, you could do something like this in your area, just to go to the schools and talk in front of people and to go to rotary clubs and, you know, I can't go all over the country. I get messages when you come to this school that I can't I think that hopefully it's what people understand, how I do it, that it's fairly simple. It's just giving some of your time to try to help kids save lives, you know, and just give kids that empowerment, that they're they're not different. They were. They got a bad hand, according to Delta, with this disease, but they got to deal with it, and they want people, you know, they're just looking for hope. I don't know how many times I've heard parents say, You give us hope. And God, what? More powerful than that. You know, with all the medicine in the world, sometimes just knowing that somebody cares, there's guy in Kansas that you don't even know, but look at him. He's driving a truck around the country, and he's trying to do everything, not only to help kids there, but kids everywhere, including yourself. And

Scott Benner 55:15
there's another way to help people feel less alone, really. Yeah, yeah.

Kent Schnakenberg 55:21
It's a crappy disease, you know, can make you feel really bad, and just the stories I hear about, but when I get a kids a chance to talk, give them a chance to just speak their mind and just see their smiles and see their kids, you know, and all their peers in the audience and the teachers. And, you know, when we do this, we give Church, the cooks and the bus drivers, and everybody's there, and it's just they know that they're there for them. They're there for them, to support them. And when I drive through these towns, down that truck, I go by school, and everybody's waving, and kids recognize the truck, and there's shirts everywhere, and there's no reason not to keep doing it. I mean, as long as I'm able to great support,

Scott Benner 56:00
you're you're a lovely person. This is, this is an uplifting conversation. You even have a website that I could send people to, or, how do they

Kent Schnakenberg 56:07
know I don't have a website. I mean, I really try to do everything the old fashioned way. It seems to work for me. I mean, we've got, I've got my personal Kent snacker Facebook page, which I don't know. I have a lot of friends, I guess, on there, and I try to post a lot on it. I have a team snack page still, but, you know, it's one of those pages where they you have to give them money to Facebook to promote things. And so I don't do a lot on that, but I just try, and I usually email a lot, and people call me and stuff, but it works for me. And I think I'm too old to change much. Be honest with you,

Scott Benner 56:38
that's okay. I think that's awesome. I think Facebook's a great way for them to find you, right? It's just your it's just your name. Yeah,

Kent Schnakenberg 56:45
my name just personal name. It's temp snacknberg. And if you go to the team stack page, I think you can get to the the other page by doing that. But

Speaker 1 56:52
you made me think I have the same thought you just have all the time, like, I have a private Facebook group has 73 74,000 people in it right now, and it's insane, right? And yet, if you post something, Facebook doesn't show to most of them. No, yeah, no, no. They want you to pay them to actually deliver your your posts to the people that you've gathered up who have said, I'd like to know what this guy is saying. Yeah, it's really something. And can I get it? I gotta tell you now we're done, but I want to tell you that I'm so impressed by what you're doing that I have not brought up the incredible thrashing that my Eagles gave your chiefs in the Super Bowl. I just let that go. We don't even talk about because you're gonna beat us at two weeks too, because you're a good man, Ken, and you don't deserve that. Okay, yeah, I keep that to myself.

Kent Schnakenberg 57:37
Well, I like to tell you this one story, please, and and, and see if you can fit it in towards the end. Absolutely this that you keep going, please. So this was like in 2015 or 16. I was starting out doing my seven rides for the year, and I was traveling to the northeast part of the country. But at that point in time, I was still trying to hit all these states. So I think the first day I drove all the way to Houston, Texas, from Kansas, and the next day, I drove to Jacksonville, Florida, and then up to Hershey, Pennsylvania. And I, the next day, I drove into the town where the ride was. And, you know, I was early in the day. I didn't really know how to recognize how many days it would take to get through the way I was doing it, because when I'm riding, I'm stop or driving, I'm stopping and talking to people and giving out information. So I got there early, and I decided to just explore the town a little bit. And I went around the town, and, you know, came got some some of their places. They were famous landmarks and stuff. And I'm hoping back to the hotel, I come to this, you know, red light, and it was a pretty busy street, and I looked over to my right, and there's this young man sitting in a wheelchair, and sitting next to was a lady in a folding chair. And I come to find out, you know, that was his caretaker. And I know this young man had some real health issues, because His neck was like lean weight to the right, and his body was kind of leaned over, you know, I could see in his wheelchair was kind of custom made where he had his left hand really clenched tightly on this tray, but with his right hand, he was reaching down and put something his mouth. But the whole time, both of them are just staring at me. And so it was one of those red lights that seems like it goes on forever, you know, it finally turned green. I didn't know what else to do. So as I was driving away, I smiled and waved really big, and he just stared straight at me. But she waved and smiled, but you know, it was kind of a sad smile, like, you know, everybody's seen. And I got up the road, two or three blocks, and something inside us, you know, inside of me, just said, Kent, you need to go back. You need to go back. So I turned on Office street, and I came up behind this building, I think it was a church, and I parked and I walked around the corner, and I just said, Hey, Kent snackberg, I'm here to do a bike ride to help kids with type one diabetes. Tell me your story. And the lady looked at me and she said, Well, this young man was diagnosed early in life with a very severe muscle disease, and he'll never be able to walk, he'll never be able to talk, and he needs 24 hour day care, but he likes to on nice days, we sit out here and look at traffic, and he must have really loved your truck, because he made this really loud the whole time. He's still staring at traffic, and. And so I just looked at her, and I said, you know, what can I do to make your day better? What do you guys like to do? And she thought for a moment, and she said, Well, when his dad comes to pick him up at night, we love to go out to eat, nothing fancy, just different places. And she looked at me, and I was wearing a bright yellow team snatcher, and she said, he really likes bright colored shirts. And I said, Well, just wait right here. And then I ran back to my truck, and I could just tell my heart was just thumping, you know, I knew something was going to happen special that day. And came back around the corner, and I gave her $60 and I said, Here you just go out to your favorite place to eat tonight. On me. And said, just to really enjoy yourself. And I said, here's a shirt for him to wear. And she held up that yellow shirt. She held up the shirt and said, look what this man gave you. And for the very first time, you know, his head tilted up towards me, and this kind of a smile, I think, came across his face, and he lifted that left hand up that had been clenched in that fist, and he opened it up, and I put three fingers in there, and he squeezed him really, really hard, and he made this really loud noise that I always think he was just saying thank you at that point, you know, and then he released My hand, and he started looking back at the traffic, and I just gave her one of my cards. And I said, I just want to tell you I loved you guys. You know, if you ever need me for anything else, anything, I said, please just get a hold of me. And as I turned to walked away, she said, you already have. And I looked back at her, she goes, we've been sitting there for two years. She said, two years, and you're the first person that's ever stopped to check upon us, and she said, You know, that's going to make me, that's going to make his father so happy. She just said, thanks for what you do. And I left. And you know, then her father, or his father, called me that night and just said, you know, I don't know who you are, but you made my family's day, and you did something today nobody's ever done for us. And you know, I like to tell that story when I'm talking to kids, and because I always feel like, you know, every story should have a good message to it. And so the message to that story is, you know, when your moment in life comes, you know, and you will have a moment when you have this opportunity, just don't miss it. And I say my moment came in 2015 and standing in front of 400 people in Tucson, Tucson, Arizona. And I said, and your mom will come. And I said, just don't miss it.

Scott Benner 1:02:08
So Ken, I tell you that story is so lovely that I didn't make the joke I was gonna make when you said My heart was thumping that I knew something's gonna happen that day. And I thought, yeah, those are the blockages.

Kent Schnakenberg 1:02:17
Ken, yeah, well, luckily, that was

Scott Benner 1:02:21
10 years I think you've probably by putting yourself out into the world like this, had more incredible experiences than 100 people combined, just by putting yourself in situations where you may or may not have an experience like that, but a little uncommon nowadays, right? Like people don't think to do that as much as you do, and I hope everybody's hearing what it's given back to you, and maybe they'll, they'll do a little bit of them, of it themselves too.

Kent Schnakenberg 1:02:47
Yeah, you know, you were talking about clicks earlier and stuff. And I'm not interested in, you know, the number of clicks. I'm just interested in the amount of people I can reach, the amount of kids I can save, and how many kids we could send a camp, and how many kids we can help with expenses. Because that's, that's what's really important to me in life. I know that they talk about social influencers, they talk about all these things, but I got a feeling that some of that's a pretty empty feeling. But when you, you know can walk in a house and a family's happy to see you after they just got from the home from the hospital three days ago, and just start telling them what you can do for them, and just let them know they're not alone. I mean, that's worth so, that's worth everything to me.

Speaker 1 1:03:23
No, I believe that, and I agree. Well, you're doing it. You're an angel out in the world, for sure. I hope your family is as proud of you as I imagine that I am. You know, your kids are probably older now, right? And your grandchild probably don't really know that. I mean, to one of your grandchildren, you've got to be like, I don't know. Grandpa's got a weird truck and he goes on a bike rides,

Kent Schnakenberg 1:03:40
right? Like, no, they just, they just say, I mean, everything to them is Team snack, you know, Team snack, track team snack shirts they know about. They're, you know, the oldest is 12 and the youngest is, like, I think nine, and so they're, you know, we have three in Kansas City, which is a couple hours from here, two in Denver, which is eight hours from here. So we don't get to see them as often as some people do, but we definitely make a lot of trips both places, and we're really proud of our grandkids, and I'm just thankful that, you know, they're proud of me and what we do, and my wife, and nobody's ever said anything like, you know you missed this. You shouldn't have missed this. They're just they know I'm helping kids, and, yeah, I try to install and install in them, and everybody else that you know, that's the secret to life is helping others. When you have an opportunity to, can

Scott Benner 1:04:23
I ask last question, sure, prior to all this happening to you and, you know, just kind of the randomness of your, you know, of your niece being diagnosed, right? Were you doing stuff like this prior to that, or was this just a departure for

Kent Schnakenberg 1:04:36
you? No, no. I mean, I've always tried to help people. My dad was really big with charities and clubs. And he was ran a cancer golf tournament here for years, and I took over for him then, and he passed away with his ad, and I ran it for several years. And we, you know, we have a Sertoma club here in town with a miniature trade that runs in its rare it's been coming, I think 1955 it started, and it holds like 20 kids and parents. So it runs like three or four nights a week in the summer. And my wife and I pay for all the rides, for all the kids and parents, you know, all summer long for that. And we just had the last ride of the summer last Sunday night, and I think they gave 253 rides out that night. And so that's just money that those families can save, that they love the train. I mean, it reminds me when I was little, when I was riding in. It just a really special place for me, and I want it to be special for a lot of the people. And this club is filled with, you know, men and women that are in their 60s, 70s and 80s, and they continue to do this. And so it's a little bit just for us to support them with $2,500 donation to pay for all the free rides all summers, it's been great.

Scott Benner 1:05:39
You might, you really might be an angel man. I can't. Thank you enough. I'm gonna call this episode. Kent has something to say. Okay, it's a great message. Like, I don't, I don't know another way to say, like, I felt the same way when I told you I had Ernie on from from cam Sweeney, and he was talking about it, I guess, kept thinking like he's been doing this for decades and he's an older man. Like, Why does he keep doing this? You know? Like, like, what keeps him going, you know? And there's something about the his conversation, and the conversations I've had with you that I don't know. I hear a fire and a motivation inside that is not in any way that I can tell, not ego motivated. Like it really is about like, just seeing other people do better. I mean, just, I mean, Ken, what's, what's a ride on the train cost?

Kent Schnakenberg 1:06:26
Well, it's only $1 but it's and, but if they have eight kids, that's $8 and if they want to ride four times, that's $32 and that's money they could just say, you know,

Scott Benner 1:06:35
really thoughtful approach. These people's kids have a nice time, and they and they have eight more dollars in their pocket, and in your thought is they can go put that into something else and and still have had this good time and ice cream on the way home. It's just you spreading joy around,

Kent Schnakenberg 1:06:50
is what it is, yeah, well, I was Santa Claus for 18 years out front of our house, and we used to do it and decorated the neighborhood, and we raised money and toys for the Salvation Army. And so, I mean, that was like, I don't know how many years ago that was, but, and they're still doing that today, 40 years later, in this neighborhood that we moved away from. And so that's kind of cool that they're continuing to the tradition. I mean, we live in a very giving town. People are very nice here, yeah, just, I mean, it's like, I almost have to have one of those hands in front of my truck, wave and, you know, the dashboard, because so many people know the truck, and wave and honk, and it's just a great feeling

Speaker 1 1:07:26
back. Well, listen, it sounds to me like you're still Santa Claus so, well, yeah, I don't know, man, you're really lovely. And this is fantastic. I appreciate you jumping back on and sharing this with me again. I hope that, I hope you hear about people enjoying this conversation for 10 more

Kent Schnakenberg 1:07:41
years? Yeah? Well, yeah, I'm sure whenever you put it on, let me know, and then I can share it to him. I will. Yeah, it's I shared that first episode last night, and people called me and stuff, said we'd forgot about everything you're doing and stuff.

Scott Benner 1:07:55
So, yeah, no, well, it'll be out. I'll tell you about it when we we'll finish up here, say goodbye, and I'll tell you about the timeline. So thank you so much. I really do appreciate this. You bet

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#1664 Turning Tables

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio -  Radio Public, Amazon Alexa or wherever they get audio.

A young listener turns the tables, interviewing Juicebox Podcast host Scott Benner about "fame", family, and 20 million downloads — a heartfelt, funny look at what he’s learned along the way.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends and welcome back to another episode of The Juicebox podcast.

Arisha 0:14
Welcome to the show. I'm so excited about today's guest, his name is Scott Benner, and he is the voice behind Juicebox podcast. If you have ever listened to a conversation around type one diabetes that feel real funny and human, you've probably come across his work. Ice last spoke to him around two years ago, and so much has changed since then, from launching collaborations to new series to even a Juicebox cruise. So there's a lot to cover today, and I'm so glad that we get this opportunity.

Scott Benner 0:42
If this is your first time listening to the Juicebox podcast and you'd like to hear more, download Apple podcast or Spotify, really, any audio app at all, look for the Juicebox podcast and follow or subscribe. We put out new content every day that you'll enjoy. Want to learn more about your diabetes management, go to Juicebox podcast.com. Up in the menu and look for bold Beginnings The Diabetes Pro Tip series and much more. This podcast is full of collections and series of information that will help you to live better with insulin. Nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. Today's podcast is sponsored by skin grip. Your devices, they can fall off, but with skin grip, they stay secure for the full life of the device. Juicebox podcast listeners will save 20% on their first order at my link, skin grip.com/juicebox, if you want a durable skin safe adhesive that lasts you want, skin grip, Dexcom sponsored this episode of The Juicebox podcast. Learn more about the Dexcom g7 at my link, dexcom.com/juicebox this episode of The Juicebox podcast is sponsored by Omnipod five. Omnipod five is a tube, free, automated insulin delivery system that's been shown to significantly improve a 1c and time and range for people with type one diabetes when they've switched from daily injections. Learn more and get started today at omnipod.com/juicebox at my link, you can get a free starter kit right now. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox

Arisha 2:33
Welcome to the show. I'm so excited about today's guest. His name is Scott Benner, and he is the voice behind Juicebox podcast. If you have ever listened to a conversation around type one diabetes that feel real funny and human, you've probably come across his work. Ice last spoke to him around two years ago, and so much has changed since then, from launching collaborations to new series to even a Juicebox cruise. So there's a lot to cover today, and I'm so glad that we get this opportunity.

Scott Benner 3:01
Oh, hi. I'm smiling from this. It's interesting to hear somebody else talk about it good, because I'm talking about it too much usually. So go ahead, please.

Arisha 3:11
So how have you been since our last

Scott Benner 3:13
conversation? It's been two years. You're telling me, Yes,

Arisha 3:17
last time I think I interviewed you, I was a freshman, and now I'm a junior,

Scott Benner 3:23
a lot has changed for me personally with my health. So two years is about the length of time it's been a little longer, but about the length of time that I've been using a GLP, one medication to lose weight. So I don't know the exact number, but so one way that I'm different is I weigh 70 pounds less than I did the last time you talked to me.

Arisha 3:47
Wow, that's crazy. It is

Scott Benner 3:48
really insane. I'm wearing a I'm sitting here in a medium t shirt, and the last time you talked to me, I would have been the two XL t shirt.

Arisha 3:55
Dang. That's, that's crazy. That's a lot of determination. Well,

Scott Benner 3:59
you know, I think some people would think that it isn't, because they think that the shot just does the whole thing, but it really doesn't. There's still a lot to do and a lot to stick to while you're using it. It does make a misstep easier sometimes, but now, no, I've learned a lot about, I guess, what I used to tell myself versus what might be true and just overall, the difference that the weight loss has made and how I feel every day and how healthy I am, it's been a really big influence for me.

Arisha 4:30
Yeah, I think that's great. And I just think it's amazing overall. Thank

Scott Benner 4:34
you. What have you been up to

Unknown Speaker 4:36
school? Just going to

Arisha 4:38
school, yeah, I guess that's like the main one to school.

Scott Benner 4:42
Have you been making your podcast regularly? Yeah,

Arisha 4:45
I'm doing like, once a month, sometimes very nice, sometimes twice a month. Sometimes I skip a month whenever I can.

Scott Benner 4:52
What are you learning while you're doing it? So I think

Arisha 4:55
I'm learning like, better, like how to talk better, if that makes sense. And how to like respond to like in between questions and things like that.

Scott Benner 5:04
Yeah, you think it's more fluid when you're having conversations than it

was before? Yeah, I think it is. Is it

I know I'm already interviewing you, I apologize. Is it bleeding over into your regular life?

Arisha 5:16
See, I don't know about that, because I think it's very different when you're interviewing someone versus like a normal conversation, you

Scott Benner 5:23
don't think any of the skills are overlaying over top of the regular like, what about, like, the quality of the questions you ask when you're in personal situations?

Arisha 5:31
I think it could, but I don't think I've been putting enough time for it too, if that makes sense,

Scott Benner 5:36
it's made me a better listener.

Arisha 5:38
Yeah, see, but you do this a lot like every day. You're like a pro now

Scott Benner 5:43
you are the third person I'm recording with today. I know it's a lot of people, so I do have a lot of practice. I guess I could pull it up and tell you for sure about this week, because today's Friday. So 123456, I've recorded nine times this week. I've probably had about 11 or 12 hours worth of conversations with people this week. Wow, you're not wrong. Like, the more you do it, the better you'll get at it. But I think it really does help me in my regular life. I'm not kidding. I think I listen better, I think I ask better questions. I'm definitely more focused on what someone's trying to tell me, or maybe even what they're not saying, but maybe we could figure out what they mean, like, you know, if we just ask the right questions and poke around a little bit. Yeah, it's been a big deal for me. I really enjoy it.

Arisha 6:35
Yeah, so I know these are all very like, expected developments, and I guess your like personal journey as a host, but what's the most unexpected development in your journey as being a host,

Scott Benner 6:48
specific to making the podcast or bigger picture even, like in the diabetes space, I guess both. I can't believe 100 people came on a cruise ship with me. That's crazy the level of I went to my first friends for life this year, and my wife came with me. She never travels with me when I do speaking stuff. It was the very first time. And we were there for a couple of days, and she remarked to me. She said, Everyone here knows who you are. Am I? And my wife's not like a fan. She's not fan growing for me or anything like that. She was making a real, a real observation. Like, I've been married a very, a very long time. My wife's not exactly running around looking for like, fun, happy things to say to me all the time. She was making a real observation. She's like every person we walk past. She's like, they're looking and they have a look on their face. They recognize you, and then you can see them look as you walk by. And every third person would wave or smile or stop or say hello. And I think she thought maybe I was joking about that, like, you know, we're over blowing it maybe when I shared with her in the past, but it was interesting to hear it from another person's perspective, that the podcast has reached so many people that there's that kind of awareness about it, I guess because I am not nearly like the face of the podcast, you know what? I mean, like I don't It's not like I'm all over the social media or, you know, or this is even video. So it's been very surprising to me, I guess, that not just as far as it's gotten and how many people it's reached, but I guess that it's been going so long. Think that's another part of it that's in my head this year, as I don't know, what am I halfway, two thirds of the way through the 11th full season of making the podcast. You know, in a calendar year, I usually record, I don't know, I put out 220, episodes, usually a year. I just, I can't believe it's still going, I guess. And then it seems to be growing, not stagnant or falling off.

Arisha 8:50
Yeah. So when I saw your post and, like, about the cruise ship, I was like, wow, he's like, really famous.

Scott Benner 8:57
No, it's diabetes famous. But yeah, I mean, it's, uh, it surprised me too, because that was the thing that, you know, I was approached by other people about doing it, so not a thing I would have known how to set up or how to run on my own. And I immediately was like, No, you got the wrong guy. Like, nobody's gonna want to come, you know. And that person said, No, I think you're wrong. And so I kind of put it in their hands, and I'll be honest with you, like, I didn't do it for money. Yeah, I didn't make a cent doing it, and it wasn't the intention of it. And I guess, you know, if we're looking for things that have really surprised me, that that was a mix of people on that ship. They were some parents of children with type one, with their kids. There were some parents in their 60s that were there with their 30 year olds. There were 20 year olds and 30 year olds and 40 and 50 and 60 and 70 year old people with type one diabetes, all gathered together and really just enjoying each other and enjoying being around each other. So for as much as I can kind of intellectually talk. Talk about that. I know community is important and how much it means to people to spend a full five days in that kind of close quarter situation. Of it was like I would give a talk every day. I made sure to eat dinner with every person that was with me, and to really watch what it meant to them

Unknown Speaker 10:19
to meet each other was

Scott Benner 10:21
was special and a little transformative for

Arisha 10:24
me. So do you plan on doing this, like, as a yearly thing?

Scott Benner 10:28
Well, it's a lot of work for me, not just that week, but, you know, leading up to it, it's sort of on, on me to, like, I don't want to use the word push it, but like, keep it out there on, like, social media. Make sure keep it in people's minds, but yeah, we're doing it again 2026 this year coming up, it'll go out of Miami, and we're going through the Virgin Islands and making a bunch of stops, seven day cruise. It's gonna be awesome. And we'll, yeah, do the same thing one more time, and then we'll see where it goes from there.

Arisha 10:57
So keeping on the topic, I guess, of like, partnerships and stuff besides the cruise. Do you have any other, like, big collaborations that you really remember?

Scott Benner 11:09
Yeah, I did something with tandem this year at friends for life, where the content from. That's not out yet, but I sat with kids from, gosh, like five to 15 who were all Moby or tandem users, and I basically did like, a short 45 minute conversation with each of them, and they filmed it for their social media. And that was really awesome. Because, I mean, I've been doing this a very long time, right? This podcast has been up since January of 2015, and before that, I wrote a blog for gosh, seven, 2008 910, 1112, 13. I wrote a blog for nine years. Now. I have a podcast for 11 years. I've been in this for you know, coming up on 20 years now, yeah, but companies, they're always very like, I probably work with every company you can think of that's around diabetes. They, you know, they purchase ads on the podcast, and we do stuff online, and no one really ever invites me to speak at anything or be somewhere. Tandem did, and I thought that was really awesome night. And I'll tell you, like, between you and I don't know why that is, but it makes a lot of sense to me that it's I don't have diabetes. So, yeah, I'd be a weird person to, like, I don't know, at a diabetes conference, to stand up on stage and say, this person's here representing the company. You know, I've always thought that that was the reason that that didn't happen. And so I've never really gone to things like that beyond touched by type one, which I speak at every year. I've never been to Ada, I've never been to ADCs or friends for life or any of that. And part of me was wondering how it would go. But, you know, after being there for a week, it was awesome. I felt welcomed by people. There were a number of people that came with me and said, I've been waiting for you to be at this forever. And some people thanked me for coming, almost as if they thought that I wasn't going on purpose. It was very, very interesting. I don't know if that answers your question. I'm sorry,

Arisha 13:10
no, it does answer my question. Do you think you're going to be speaking more at these events? Or

Scott Benner 13:17
Well, yeah, that one, I got an offer while I was there to speak at something else. So, and it's private, so it's not a public thing. Yeah, and that'll, actually, I'll be in Ohio

Speaker 1 13:27
for that. Oh, really, where in Ohio? I don't really

Scott Benner 13:31
know exactly where yet. It's not, it's not till October. Okay, it's still two months away. I don't have all the details yet, but I'll be speaking it at a poor company to their behind the scenes workers. So they're looking, you know, just for me to give a talk. So I'm doing a little like public speaking thing there. I have committed to going to friends for life, Ada and ad ces next year in 2026 and I'll be doing that with a partner. Do you know the sugar pixel? Do you know what that is? Yeah, yeah. So at those events, you see these big kind of booths, sugar pixel and I will be in one kind of giant booth together at those events, yeah, yeah, that's happening. And touch by type one is in the Investigation Phase of doing some diabetes talks with me around the country. They're trying to figure out ways to, you know, fund it right now, but the idea is for me to go to, I think, Chicago, Nashville, Austin and Philadelphia, and do, like, sit down Q and A's with people for a number of hours. And we're hoping to bring Jenny to some of that stuff too. Yeah, yeah. So that's what may be on the horizon

Arisha 14:42
for next. Year. Even though you don't have type one diabetes, you have a lot experience to talk from, especially being like a dad for someone who has type one diabetes, I think that is just as valuable, or even sometimes more valuable, than someone who has type one diabetes.

Scott Benner 14:58
Yeah. Today's episode is brought to you by Omnipod. We talk a lot about ways to lower your a 1c on this podcast, did you know that the Omnipod five was shown to lower a 1c that's right. Omnipod five is a tube, free automated insulin delivery system, and it was shown to significantly improve a 1c and time and range for people with type one diabetes when they switched from daily injections. My daughter is about to turn 21 years old, and she has been wearing an Omnipod every day since she was four. It has been a friend to our family, and I think it could be a friend to yours. If you're ready to try Omnipod five for yourself or your family, use my link now to get started omnipod.com/juicebox omnipod.com/juicebox get that free, Omnipod five Starter Kit today, Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox you can manage diabetes confidently with the powerfully simple Dexcom g7 dexcom.com/juicebox dexcom.com/juicebox the Dexcom g7 is the CGM that my daughter is wearing. The g7 is a simple CGM system that delivers real time glucose numbers to your smartphone or smart watch. The g7 is made for all types of diabetes, type one and type two, but also people experiencing gestational diabetes, the Dexcom g7 can help you spend more time in range, which is proven to lower a 1c The more time you spend in range, the better and healthier you feel. And with the Dexcom clarity app, you can track your glucose trends, and the app will also provide you with a projected a 1c in as little as two weeks. If you're looking for clarity around your diabetes, you're looking for Dexcom, dexcom.com/juicebox when you use my link, you're supporting the podcast, dexcom.com/juicebox head over there now. Well, it's definitely a perspective that I think has a lot of value. Actually, I was talking about this with Jenny this afternoon. We were talking kind of privately, and she talked about having me out to an event to speak that she's going to be at. And I said, Yeah, I think I could do a good job of maybe being a conduit for people's conversations. If I have, I don't know, a superpower in this space, it would be that I've had so many conversations with so many different people, like, I don't know what to call it exactly, like, maybe I'm the book where the conversation I've had all those conversations, and I've dug through people's lives, and my real goal is to just get better information out in the world for my daughter, right? So I don't have, you know, I try very hard not to be biased about things that I hear. I try very hard to hear your story and an adult story, and, you know, a parent story, and just hear what they're saying and try to figure out what it is that they're being motivated by. And then, in the end, you're looking for commonality, right? Like, yeah, yeah, you find something that a parent of a type one says that could be very valuable for an adult with type one diabetes to hear and then vice versa, there's adults have great experiences that parents should hear about. And I was saying, I think maybe I could be a conduit for those stories. Because, again, I'm kind of at a loss for the right word. But, I mean, I'm sure there's people out there, but I don't know who they are, and they, if they, if they're out there, they don't, they don't have the ability to reach as many people as I do. Yeah, I think that those are stories are very valuable, that I've been at the center of each one of them, and that hopefully I'm trying very hard to learn something, to hear something, to share something that will be valuable for everybody. Doesn't matter if they're adults or children, if they're 70 or 10, I'm trying to be the place where all this information can get dumped and be regurgitated out into the world. Because I think that is the thing that beyond my podcast, that other there really just is no other space in type one where somebody is able to to give this much time and to hearing those stories and is making the effort to record them and put them out as much, I mean, volume. Honestly, as anyone else, there are people who have podcasts about type one who, in a year, won't put up as many episodes as I'll put up in two weeks. Yeah, you know that's true. So anyway, somewhere in there, I think I'm able to let people tell their stories and record them for other people to hear, and hopefully that those stories are broadening other people's perspectives and ideas. I guess is would have been a short way to say it.

Arisha 19:48
So you spoke as your role just now as being like the connector from a bunch of different people's stories, but you must be hearing a lot of contradicting information. Question, how do you deal with that

Scott Benner 20:03
contradicting mean, like, management wise, like, or even like, you know, when, like, a late night host makes a joke and one person's like, I think it's funny and the other person is insulted by it. Like, what do you mean by contradictory?

Arisha 20:15
More like, I guess, information for type one diabetes. So maybe if someone says, like, this works really well for me, and then this one set, and then another person says, Oh, that doesn't really work for me. And like, I mean, there's always like, gaps in information. Like, I'm kind of talking about

Scott Benner 20:32
that, yeah, I guess the place that's taught me the best about how to deal with that is, actually, is Facebook. So for people who don't know my Facebook group, I have a private group and a public page, and I think my public page has 25,000 or so followers, but that's tough, because social media followers are it's a weird abstract, right? Because I've been around this for 20 years, like, I'm sure there are people following me on Facebook who are dead, you know what I mean? Or, yeah, don't go on Facebook anymore. Same thing with Instagram, like it's, I think I have 25,000 Instagram followers, but that doesn't mean 25,000 people are seeing something that I post. It's far from that the people fall off. But in the private group on Facebook, you have access to a lot more data about people who are actively following and participating. So in my private Facebook group, I think today there's about 70 I'm going to lose like 74,000 members, and in every 24 hour period, 45,000 of them are active in the group. They make 125 to 160 new posts every 24 hours and counting, likes, like, little hearts, little thumbs ups and comments. So likes, hearts and comments almost 9000 a day. Wow. So it's a big group of people, and it's split pretty evenly between caregivers and adults, even though people will tell you they don't think so. But what I've learned is that the adults don't talk as much as the caregivers do, but I can see them there, and it's a little weighted towards women. Maybe, I would say maybe, maybe there's 35% men. The other side is women, usually, and all of them, and a ton of different countries, and you, where you see that most is the time of day. There is no downtime on the Facebook group, meaning that if you ask a question at any point, a 24 hour clock, somebody is there, like there's always at least a few 100 people on which is, it's insane, actually. But my point is that all these different countries, all these different ages of people, all these different, you know, genders, you know, there's somebody who has every experience in life that you can imagine. You're not wrong. They're not all going to agree about everything. Right? Yes, but as the person running the group, my goal is for that group to be valuable for everybody, and that generally means as many people as possible, and we're putting aside people who are just trying to make problems, or maybe honestly, a little mentally ill or something like that. Like there's always going to be people like on the fringes of this conversation, but for the most part, the group is incredibly supportive and valuable, right? Yeah, but it becomes that when you let everybody speak, everybody gets to say what they think, and everybody gets to say their experiences, and then it's up to smart people to look at all of that, and coalesce it together and come up with some sort of a an idea chain, or a roadmap for themselves, and find the things that they want to look into and, you know, like, so that they can decide that's an interesting idea. I'd like to find out more about that and or that sounds insane to me. I'm not going to listen to that. So if somebody there was a post the other day where somebody was like, I saw this Tiktok, and this lady said she took this cinnamon and she mixed it with something else, and her blood sugar was stable. You know what? I don't know if that's right or not, but go ahead and tell go ahead and tell me. You know what I mean, like, and, you know, 10 years ago, I would have been like, cinnamon doesn't cure diabetes. That's what everybody would have ran. But now I'm like, I don't know. Like, if this helps somebody find out more and learn something that helps them great, and if it teaches them it's bullshit, then fine, too. You got to let people talk. Yes, you know. And so I mean, in the end, if somebody disagrees with something, what I like to say is, like, let them talk. That's been their experience. Take it or leave it, like, who cares? You know what I mean? Like, just let them say what they want to say, and that's it. Now, if somebody says something insane or hurtful that I have a problem with, like, I don't allow I have, like, pretty simple rules in the in the group, I don't let people proselytize. You. So like, if you think, I don't know, it doesn't matter if you think, oh, a form of eating is a good idea, right on, you should share what you think. But if everybody that posts gets the same answer back from you, you should try eating like this. Well, then you're proselytizing. But please don't do that. Yeah, you know you please stay and continue to add your thoughts. But this incredible drive to make sure that to answer every question with, like, you know, eat like this. That's not okay. And pushing people around, I'm not okay with. But sometimes you see people who are just, I don't know, like, sometimes we call it, I know you're young still, but sometimes we call it drunk o'clock, certain time of the day where people are a little feistier. There are plenty of people who will later come back and apologize and say, Hey, I answered that question when my blood sugar had been high for hours. And to be honest with you, I think I was being a little salty, and I'm sorry. I've had people say, Hey, I realized that I was flippant with somebody, but my blood sugar was low. If we can't understand that in our type one diabetes Facebook group, then, like, where else are you going to get that kind of understanding? So yeah, of course, we're very understanding about that. If you're being terrible on purpose, that's not okay. And if you're just trying to sell something, that's not okay too. I give you, I think, which is a great example, is that not long ago, this gentleman came on and he was like, I'm a tattoo artist, and I'd like to give type ones free tattoos. Now on that face, that's lovely. And I took this person at their word. They were just trying to be kind. But at the same time, Marisha that is marketing for their business. And so I said to the person, I'm sorry, but you can't self promote a business here. Yeah. And so, you know, please don't do that. And the person just pushed back. And they were like, I'm not promoting, I'm giving it away for free. And I'm like, Well, yes, but then that person now knows where your business is. The next time they need a tattoo, they're going to come back to you and spend money. It's marketing, yeah, and he didn't see it that way. At some point, it couldn't matter to me that he didn't see it that way. Like, even if that's not his intention, it doesn't matter, because now I'm if I let that go on, then the next person and the next one and the next one, and I'm not lying to you, and 500 more are like, Oh my god, I have an Etsy where I take insulin bottles and I turn them into Christmas tree ornaments, and then ornaments, and then the next thing you know, the whole group is full of ads for people and what they're trying to sell. And then they sell some of them. And then that allure is very, very strong. And now they know that that group sells stuff, and they will not stop till you stop them. And so I try to get ahead of it. And you know, with the case of the guy with the tattoo place, I felt bad. I explained it to him, he wouldn't stop. I suspended him. He wouldn't stop. And I finally had to ban him out of the group. And I feel terrible about it, because he's got a kid with diabetes, and I wish he was in there, yeah, but, you know, like, so anyway, like, that stuff stinks, because in the end, I end up being the bad guy, and I was just trying to stick up for something. I was trying to stick up for the entire group and keep it what it is and what it is, you know, is a pretty amazing support system for people. Yeah,

Arisha 28:12
so would you say like your the community and like your Facebook group, or any like reviews or anything you get like? Do you think that shapes the direction of your content, or is it more like what

Scott Benner 28:24
like the people you interview? I think there's three things that shape the content. It's what I'm interested in and what I what I think is happening. You know, good example, I'm proud to say that I think I was out ahead by a couple of years on what GLP one medication might do for people with type one diabetes, and so I was having conversations about that back when I was getting yelled at for having those conversations. Does is not for type ones, it's for type twos. It's not it's not labels, you know, like that whole thing. Yeah, I felt like I saw the writing on the wall. And I thought it was valuable to let people tell their stories around that my expectation of what people need to hear is part of it. I think that what I see people talking about online, that's part of it too. You can learn a lot about what people need, yes, by what they're asking for, but oftentimes you can learn more about what they need by seeing the things they don't know to ask for, if that makes sense, yeah, right, those are two big ways. And then the third way that the content kind of gets brought up is, like you said, you have people on, and they tell their story. And eventually, in every episode, someone says something that makes me think, Wow, I never would have thought of that, or what a great perspective that I didn't hear or, you know, like they say something, and then someone online will comment, I'll go. I never put those two things together. And now I did. If you treat the podcast and the community like the real, like gem, the asset that they are for or can be for people, and you focus on it, you. It is a never ending engine of it's a me. It holds a mirror up to people, right? And it lets you see. It lets them see what they need to see in that mirror. It's, it's, it's almost like a magic mirror, you know what I mean? Like you just, you hold it up, and it reflects back to them the thing they need only if it's shepherded by somebody who's not trying to turn it into something else, like, I'm not trying to turn my podcast into a bigger podcast, or I'm very sure that it is doing a good thing, and my only goal every day is to keep it fresh and and viable, so that it can continue to do that thing for people.

Arisha 30:39
Yeah, so you mentioned that you were really into, like, the GLP one medication for type one diabetics for the last two years. What would you say? Like, you're interested now in,

Scott Benner 30:51
ooh, well, that's good of you. Look at you. You are really good at this. Well, this year, I spent a fair amount of time on talking about nutrition more, and I don't know if it's as much about me seeing the tip of the spear right or being out at the edge of the surfboard or anything like that. What it was more about was that when I started the podcast, I hold this belief still very strongly, even if I was a perfect person and I knew exactly how to eat perfectly, and I did it every day, and I exercised exactly like I was supposed to, and I was a perfect person. And I made a podcast about being I'm so perfect. I do all these things perfectly. If you do all these things perfectly too, you'll be I don't think that actually motivates anybody, right? And I'm not that person to begin with. But even if I was, I don't think that helps anyone. I don't think people like to be told how to eat or what to do, and so when I saw the big picture, I thought, to help most people with type one. What would help them most? I think, is a firm understanding of how insulin works and how to use it, and to give them that information in a way that is incredibly easy to understand, no matter who you are in the conversation. And I did that, and I continue to do that. I don't want to over blow the number, but I'm about to celebrate 20 million downloads on the podcast. That's great for you, and you make a podcast, yeah? That's really cool. That's really good something. Yeah, I'm about to celebrate these 20 million downloads, and I think, Okay, well, I've given people a very clean like foundation for how to, like, think about their their insulin. I can't tell them exactly what to do. I kind of lay it out for them, and they take it back into their own life, and they apply it and figure out how it works best for them, right? And this is working over and over again, day after day, week after week, year after year. Now it's been a decade, and the proof comes back every day. I could sit here, I could sit here for 24 hours and read you reviews and personal notes from people about how the podcast has helped them. So I know my initial idea is good, but these people would be better off if they knew a little more about nutrition, if they knew a little more about what they were eating. And so I think I've finally been doing this long enough that we can talk about a little bit without insulting people like they know I'm not here to tell them how to eat. I'm just sort of doing with food the same thing that I do with diabetes, which I think is to talk about it from a very middle ground perspective, you know, like, I know in politics, it's some some people hate it if you're in the middle, right? If they say it means you don't stand for anything, like take a stand, they want you to take a stand. Yeah, in thinking about your health and diabetes, it's more important if you have tools, and then you apply those tools to your life. But I would like for people to have some tools around understanding, you know, that what they're eating has a lot to do with what their blood sugar is doing. Yeah, you know. So I've been doing more with that this year with Jenny. And Jenny is, of course, like a CDE, and she's she's had diabetes for over 35 years. She's been in like, a ton of my episodes about management stuff. Yeah, so I don't know that that means that I see where things are going. I think it more means that I saw what I was able to talk about without pissing people off. I guess. Yeah, that makes sense, and thusly giving myself the best opportunity possible to grow their toolbox

Arisha 34:23
a little more. Yeah. I mean, since you have so many listeners, I mean, do you ever get like, fan mail or like, PR boxes?

Scott Benner 34:31
Oh, yeah, it's embarrassing. Are you trying to embarrass me? No, I'm just curious. People write every day, really, yes, I receive multiple emails, DMS, Instagram messages, Facebook messages, Tiktok messages. And I got to tell the people at Tiktok, your app is very, very confusing to use, so please, like do better with that. I don't like to say it because I think everybody says it like I've watched. People with like, 200 Tiktok followers. Like, I hear from everybody all the time. Like, well, you're hearing from fewer than 200 people. But okay, yeah. And so I don't like to say it, because I think it comes off as just, really, it makes me feel weird to say it, like, like, yeah, people. People write all the time. But I'm, you know, I'm, here's one from today. I wanted to reach out to say a big thank you for your episodes that focus on GLP one with type one. My 14 year old started one about three months ago. A 1c has gone from six nine to six. Daily insulin use is down from 60 units a day to 40. She's lost 20 pounds. She's been much happier, more energetic, and generally feels better. I'm also grateful for your podcast. I feel pretty anxious about trying these meds, but listening to the info from Dr belevens that you had on and from the mom whose daughter had such a positive experience, made me feel so much better. I appreciate that you are hopefully changing some of the stigma around these medications. I honestly have only told my best friends that we're even using the meds, because people are just so judgmental. Anyway, I want to say thank you very much. That one came today, and that's in my email today. It's very it's very touching. Is like, it's not a strong enough word, right? Because so that email came today. Yesterday, I interviewed a gentleman who told me that his daughter is off at college safely and happy because of me, and then at the end of the interview, told me how, you know, just as an aside, he's like, also, I listened to your weight loss stuff, and I've lost 36 pounds now, and told me how his life is better now because of it. The DMS are like, pretty endless. And the thing that I think I've been tracking, tracking sounds like the wrong word, but like, I'm gonna, I'll pull something up for you here. Like, it's lovely to hear from people like, you know, and to hear their stories one on one. I have this day once a month where I sit down I answer all of my emails. Takes about four hours. Usually, I sit down and answer my emails every month, but respond to them. I do. I respond to all my emails. Oh, that's very nice, yeah. Well, I mean, first of all, like, I want to Yeah, but it is. It's an overwhelming process, like, I'm exhausted by the time I'm done with it, because you're really trying to hear, like, what is this person telling me, yeah, what has motivated them to to reach out like this? I mean, it's time off of their life too, to write this email. Yeah. I want to figure out what it is that impacted them so much. To see is like, is that a thing I did on purpose? Is that a happenstance thing? Is it something I could be learning from? Yeah, but anyway, I do this thing. When people come into the Facebook group, it asks you a few questions. It's mainly to make sure you're like a real person. But one of them is, how did you hear about the podcast or this group? Like it's a little slash thing, the one that I don't keep every one of them, but every once in a while, I copy and paste one of them out, and I put it in a document. I hold on to it because it ranges from like the doctor in the ER to, more specifically, like the East Tennessee Children's Hospital endocrinology clinic. Told me about it. I saw an ad for a nootropic, and inside of that nootropic, somebody commented about the Juicebox Podcast. I'm trying to figure out, like, how do people learn about this? Right? I had a nurse in the ER ask me if I wanted something that might make my diabetes situation better. And then she told me about this, but the one that came today, this one happens more than I would have imagined. You are mentioned on every Facebook group I'm a part of that relates to diabetes. And you can take that a couple of different ways, you know, and you mean, certain people might hear that from a marketing standpoint and be like, That's awesome. Good for you. That's that's what you're going for. What I hear is that there are countless people who have been helped by it. Yeah, so much so that they're taking the time to tell somebody else, and I think that it's the big deal. There's plenty of things in my life that helped me, but how many of them helped me so much that I feel compelled to make sure other people know about it? I'm proud to be somebody that people are compelled to share, I guess. Yeah.

Arisha 39:12
I mean, I think it's so great that you respond to everything I know. When I reached out to you in the beginning, you responded really quickly, and especially being with, like, having such a big audience and taking the time to respond, I'm sure that's really like meaningful for everyone who, like, wrote something to you, and it was definitely, like, really meaningful when you responded to me. So these were very like, uplifting, like stories, but or like feedback that you kind of get. Do you have like, a really big, motivating or like, moving stories that you've heard from listeners, like, oh, maybe in your podcast?

Scott Benner 39:49
Oh yeah. Oh my gosh, all the time. Yesterday, a gentleman sent me a picture of a tattoo he got on his calf of a Juicebox with a microphone. Synthesis bolt with insulin on it. And I know that that gentleman would tell you that he believes that his eyesight was saved by the podcast. There's a guy out in California named Mike who came on and shared his story, and if you go listen to his episode called complications are complicated. You'll hear a decades long tale of a person who was diagnosed with type one diabetes before management was great, and that his health was failing in multiple ways, and how much the podcast helped him. There is an episode called do hard things where a mom comes on and shares that she had found the podcast for her type one child, and it's going really, really well, and she's super excited to take him to his next endo appointment. And it's very sad, but there was a snow storm that kind of, like, broke out while she was traveling to the endo appointment, lost control of the car, and the kid, the child, passed away in the car accident. And that she continues to listen to the podcast because she said it makes her feel closer to him. And she said that when he once he was gone, you know, like that whole process of doing the diabetes thing was such a big part of her connection with him that it helped her to hear other people talking about doing it for themselves or with their own kids. There was a woman on an after dark episode that while I was interviewing her, she was describing her life, and it was just a lot of alcohol and drugs, and she wrote to me many, many, many months later to say that she finally listened to her episode, hurt herself and decided that it's not the kind of person she wanted to be, and made a big change for herself. And I'm just telling you the ones that are popping into my head, yeah, but I'm pretty sure that in every episode when I'm interviewing a person who's been a listener for a while, you know, if you go into that Facebook group and just look for people who have tagged me, they are there to tell you, like, it gets focused on me, which is not right. Like, I really do believe I might I'm just the person having the conversations. Like I'm the, I don't know what to call it exactly, like, maybe the magnet in the middle that pulls everything together. And it's you can't ignore the fact that, like, in this day and age, like you have to be if they have a big enough following so that people can find you like, that's how like, I'm booked right it's August right now. If you wanted to get on the podcast right now, you can't get on till March of 2026, yes, and at some point in October this year, I will open up that schedule out to like July, and it's going to fill up in a day. In a day, it'll I will have an interview set up every day between March and July, just in one day. To accomplish this thing, like, you have to have a certain size and kind of, like gravity, right? Like you almost have to be a small moon, like holding everything together. But at the same time, it's not me, like you could maybe make the argument that I'm conversational and chatty, and I don't fall into the traps that people fall into when they start talking about stuff, like this niggas. They talk very on, you know, very professionally and soft, and make sure that the, you know, like diabetes, is very like, they start sounding like, you know, the like the JDRF or ADA or something like that, or sounds like a PR person came on from a from a pump company, and they're talking, and I'm just talking like a person in the end, like, without all these people and their stories, then I don't you don't I mean, like you're writing to me to say that I helped, but all I did was I just gave you all a place to go to hear the thing really, you know? So I'll take credit for making it, but I think that you all are what helped. I'm just the guy who pushes a record that makes sense?

Arisha 44:02
Yeah? So you see yourself as more of like an educator, like a storyteller or like a community builder? Is there any one of those that you like see yourself more as or think of yourself as?

Unknown Speaker 44:19
You know? What's funny, if you would

Scott Benner 44:22
have just asked me to describe myself, I never would have said any of those things. But you're not wrong. I'm probably all those things. Am I one more than the other? I don't know. I guess depends on who you are and what you need. From the podcast, for the people who need community, they see me as a community organizer for the people who don't know how to Bolus. They see me as an educator, right? And like and so on and so forth. It depends on like your need is how you see me and you know, and that's on the positive side again, on the negative side, there are plenty of people. I just wanna say that plenty of people don't like me, right? I mean, that's always gonna be, but, you know, there are plenty of people who are, I don't know, tried to do something in this space, and it didn't work out for them, and now they're just mad at me. Yeah, now they're gonna tell you they're mad at me because I'm bad at it, or dangerous, or whatever. They're gonna say, like, right? Like, whatever reason they're gonna have, I'm gonna have, I'm gonna tell you that, from my perspective, they seem mad at me because they seem jealous, yeah, and like, they tried to do a thing and it didn't work out. And my thing did work out. So now let's go figure out what it is about me you don't like and say, Oh, see, he shouldn't be doing this because he thinks this, or he said that, or whatever. Yeah, you know, like, so there's the, you know, the other side of it is, it's consistent. Is, my point is, like, whether you like me or you don't like me, what you think of me has very little to do with me and a lot to do with who you are. Yeah, that's one of the things I have 100% learned making this podcast that I no longer joke about famous people's lives, sports figures, actors, politicians, I no longer make judgments about them, like, you know, because everybody you know what I mean, like, people joke around all the time about like, you know, like somebody that people, these people feel bigger than life to you like they're not real people. It's okay to like, it's okay to them, or it's okay to like, you know, tell people you know, you know what they're thinking, or whatever. But what I've learned by watching people who both hate me and love me talk about me is that they don't really know me. Yeah, they just have an idea, and I'm over here like a static target to help them complete their circle, and most of the time, and I mean, like 99.9% of the time, I'm having a great one way conversation with those people. I interviewed a great lady today who, you know, just came on to say that she just had a really healthy pregnancy because of me and the podcast. That's awesome, you know what I mean. And you could tell as I was talking to her, like she feels like she's all like, starstruck talking to me, which is insane, because I'm in an extra room in my house. You know what? I mean? Yeah, you know, I'm in this room with a couple of chameleons and a desk and a microphone and like, you know, and she's treating me like she's meeting somebody famous, right? But that feeling she's having, again, has very little to do with me, and more to do with who she is, where she was, and then how she intersected with this thing I'm doing, you know, and I forget what your question was. I'm so sorry, but I feel like I answered

Arisha 47:30
it. Yes, you did answer it. So you just briefly mentioned about all the roles you play, but I feel like one of the biggest roles you are like you are a dad to like. What roles do parents play like in shaping your podcast, especially since you started your experience as a dad,

Unknown Speaker 47:48
I think in the beginning,

Scott Benner 47:49
their concerns were my concerns. And as time goes on, you know, like I started out with other people who started out with me, yeah, and as time goes on, I'm still with the people who are just starting out, like, I would tell you that, you know, a lot of the listeners the podcast are more newly diagnosed people, or people who feel like they're starting over, right? You know, if there's a path we're all walking, I'm out ahead of them to some degree, on the path. And so when I was starting out, their concerns were my concerns. And now I would hear them and think, Oh, I'm worried about that too. How do we fix that? Like, how do I figure that out? But then once you get it all figured out, yeah, and I don't want to say, like, this whole thing feels easy to me, but most of the times, like diabetes, nuts and bolts wise, does feel pretty intuitive to me, because I've got so much time with it right? So now I'm out ahead. I've got that experience, and I'm still hearing people who are more newly diagnosed. Now I'm able to hear their concerns quickly, point them to stuff that will help them, but also spend time thinking about what bad places are they going to get led to by worrying about the things they're worrying right now, and how can I help them now so they don't end up in those bad places later. Yeah, there's one thing about being like, I know, super valuable to your seven year old who has type one diabetes, but it's hard to remember that that seven year old one day will be 15 and 18 and 20, and that you're still trying to have a relationship with that person, and that one day, they will not they will not listen to you anymore. You know what I mean, and you want them to leave with good information, but the good information is not enough if they're not willing to use it, or if they're busy rebelling against you and how you raise them. So I'm trying to see more of a bigger picture when the parents are there, and I think that's how they're helping me make the podcast?

Arisha 49:41
Yeah, so I feel like you've been doing this well, not like, I feel like you have been doing this podcast for a really long time, and you've seen the technology like, especially for diabetes, like, grow. What are you like, most excited for in that and like, specifically with, like, the increase of A. Die in today's world.

Scott Benner 50:01
Yeah, right. So, yeah. So when my daughter was diagnosed 2006 that right, yeah, 2006 we got a freestyle meter syringes and a vial of two different kinds of insulin. I think they gave us the old Lily red box glucagon. Yeah, that's right, that's all we got. And those were our, the entirety of our tools, right? And test trips today, if you're have halfway decent insurance, you're going to have a CGM before you know it, you're going to have a pen, not a syringe, and you're going to have an opportunity to get a pump pretty quickly, and every one of those pumps has some sort of a manual setting and has an automated insulin delivery setting. On top of that, there's the awesome loop, the awesome Android APS trio, you know, all these Do It Yourself algorithms that are out there as well. Now there's more CGM, there's Dexcom, there's libre. What is it? Three plus, ever since has making an implantable CGM Crazy, right? Yeah, what else we got? Like Medtronic just came out with their more modern CGM, and people are using G you know, my daughter micro doses glps, which are significantly helpful with her insulin resistance. We're learning that there are type ones who who maybe could have a dual diagnosis. They have insulin resistance. If they didn't have type one diabetes, they probably still have insulin resistance. So now they have type one and they have insulin resistance. Glps are helping them with that. Half of it with the insulin resistance. You're seeing glps help people with inflammation, which is, of course, very tied to a type one and other autoimmune issues. Sooner than later, you're going to see those GLP ones that are all injectable now, hopefully be in, you know, in a daily pill, which should help spread out their effect effectiveness over, you know, a little better than just shooting them once a week. And we're all moving in that direction. There's the inhaled insulin, right a Fresno. I saw that there's a lot of stuff going on out there. What am I most excited about right now is that tandem said, Hey, we're going to go back and try to make our algorithm a little more aggressive, and then they did and then Omnipod. I don't know if people know this or not, but OmniPods in the middle of a trial right now where they're trying to make their Omnipod five more aggressive. I'm sure that's not how they would put it, but you know, yeah, they're working on a 2.0 version. Yeah, I love that. These companies have to compete with each other, that I think is always going to be the best thing for everybody, because then nobody sits on their butts and says, like, we're selling this thing good enough. Let's just go sell them now we you don't have to make these any better. You have to make them better. You have to make them you got to have a more of a cell phone mentality, where we you know, this stuff's got to get better and better and better. And on top of that, what are you seeing right now in the DIY community? Some of these, some people are working on, like, take a picture of your food. It estimates your carbs, that AI stuff like, where people who really understand AI is not, not me for certain, but and can program it like you got to think that there's not long before you're taking pictures of everything you're eating. It's getting logged the AI is remembering that when you eat it, you know, this restaurant versus this restaurant, that you have a fat rise two hours later and you don't at this one as much like that kind of learning has got to becoming, you know, I hope. And you know, in a situation where the next time you go back to that restaurant and you take another picture, the thing goes, Oh, I remember, like last time you needed more insulin an hour and 45 minutes after you ate. So, you know, maybe we'll start ramping it up then to get ahead of it this time. Like, who knows? Like, where any of that could possibly go outside of the devices, you know, just for me personally, like, I've, you know, amassed all these conversations with people. And you see, very easily, you can take the transcripts of the entire Pro Tip series, and if you asked me to go back and, like, you know, listen through everyone, write down every thoughtful thing that was said, you know, yeah, go out to the community and ask them if they agree that this was thoughtful. Like, you know, I mean, by the time I got all that done, I'd be, I'd be dead of old age, right? It's just me here, yeah. But instead, I can take those things, drop them into AI and say, Please just pull out all the key takeaways from this conversation, build a database of that. Take the database back to the community and say, hey, you know, before I show you this, just top of your head, what are things that were said in the podcast that were really helpful, and then they gave me back a ton of data, and then you put the two things together, and you tell the chat GPT, or whatever you're using there, like, Hey, this is what we think is key takeaways. This is what the community said were key takeaways. Where are the overlaps? Bang. Here's the overlaps. Great. This is really key information for people. Now I'll take that and find other ways to say it, because we've already reached all the people who jived with it the way I said it the first time. Let's find a different series to say it again in. Let's find a different way to say it. Let's learn to make it shorter content or longer content like I get to keep building my database of what's valuable for you guys, and then as I grow and learn and listen, hopefully, the next time I talk about it, something else will come out of that conversation that people will find either more helpful or maybe it'll reach a person who heard it the last time, and it didn't ring a bell for them, but in this time it did. Yeah, I think in general, that's what I'm hopeful about. You know, people used to say like, well, we need faster insulin, and then we got fiasp and lumbev, and nothing changed, because it doesn't, apparently work that fast to begin with. For some people, wasn't consistent enough. I've heard people say, like, we need better cannula tubing. Because, you know, if your body doesn't see it as a foreign invader, then the sites will be better for longer. Like that's all well and good. I don't see anybody doing that, yeah. What I see is that if those pump companies have to keep honing their algorithms, then hopefully people will have better and better outcomes. Now, what's the other side of that is that there's a reasonable concern that an entire generation of people will get type one diabetes and not fundamentally understand anything about it, because the machine is taking care of it for them, which will be fine as long as the machine is working. But what would they do? You know, if they had to go back to shots, I know they would learn it then, and hopefully they would learn it more quickly because they've seen it happen. But I do think there's a reasonable concern for people not having a fundamental understanding of timing and amount and how insulin works and when they need to put it in, and how certain foods act, that

Arisha 56:56
kind of stuff too. Yeah. So speaking on, like, your Pro Tip series, do you have, like, a dream series or, like, a really memorable series that you have posted or want to post?

Scott Benner 57:08
I mean, they all do something different. You know, we made pro tips first, and I think they're great if you're reasonably comfortable. So then we added bold beginnings, because it's sort of like Pro Tips for Beginners. Yeah, this year I did small sips, which were, I think, 17 or 20, like I told you. We went out to the out to the community and asked, like, what are like? I basically said, like, give me one sentence, takeaways that have been the most impactful for you. And we got back, I think I'm being honest about this 80. I'm just saying if I, if I the number wrong, it's not on purpose, 80 or 90 pages full of returns from the internet. Wow. And then we collated them, and it wasn't me, by the way, it was the person who volunteers their time on my Facebook group. They pulled it all together, and this person has kind of an encyclopedic knowledge of the podcast. And we pulled together the list of what people said was really valuable for them. Went and found what episodes they were on so I could refresh myself about how it was said in the time. And then we made short, like, 10 minutes episodes about them, thinking like, Okay, if you're not going to listen to the pro tips because they're too long, which is the thing people will complain about, like, 45 minutes or an hour. They're like, Oh, it's so long. And then I thought, well, maybe 1015, minutes will be shorter for them. So small sips is really like pro tips, super charged and small. I'm proud of those. I think those are really awesome. Yeah, I don't know. You just kind of keep looking for ways to reach people. You know, what am I trying to do in the I don't know, like in the future, I'm trying to find more people who are lost, and who could potentially spend an entire life lost, that you know, who could potentially have complications 1020, 30 years from now, for what? Not understanding how to Pre-Bolus, or, you know, the fat and french fries makes their blood sugar go up and they should Bolus again. Like, that's not a fair reason to need help, medical help in the future. Like, I'd like those people to just be as successful as early on as possible with, like, a set a good foundation of understanding. And I'm just looking for different ways to spark their imagination and get them to think about it. And also, I've learned that you can't really make anybody take care of themselves, like everybody has a moment when they decide, like, Okay, I'm gonna try harder now, or I'm gonna go back in again and try to figure this out, or whatever it is that ends up like lighting people's, you know, excitement for their own health. And what I like the most is that the podcast is there and it's current, because when they go to find it, it's there. Yeah, it's not like an old, dried up podcast that nobody posts in anymore. It's not a thing where they look up and they go, nobody's posting this in a week. You know what I mean? Like, how are you going to find the pro tip episode from a year ago if you're logging on today for the first time, if the podcast isn't fresh and moving constantly, and reminding you that those episodes exist and reminding you that there's. A community to go to, and you head over to that community. Imagine you head to that community and you see 160 new posts that day. Yeah, I don't know if you're on Facebook, but there's other type one groups like, you look at them, they go like, some of them say, three new posts a day, five new posts a day, 10 new posts a day. I'm like, Oh, how did that? How does that cover everything? Yeah, that's not even enough people to have a good conversation. Like, I want 20 people with 20 different opinions weighing in on things. And guess how? You kind of get to it. The one chameleon is staring right at me. How are your chameleons? They're doing well, but the blue one too. I don't I don't want to say how many I have, because I feel like that's weird. The blue one is eyeballing me big time right now, like in a ninja stance. He's back on his two legs. Are you hungry, buddy? I gave you a silkworm earlier. Did you eat it? Oh, hold on, a second. I think I'm I'm looking at the silk. Eat the silkworm, don't stick. It's very uncomfortable. I have three chameleons.

Arisha 1:01:07
Yeah, I thought you only had one from your

Speaker 2 1:01:09
things happen, and then other stuff happens. I don't know what to tell you. Okay, no, I have the one that my family got me, and then I have the one that I bought because it was really the one I wanted, and then the one that they got me wasn't the one I wanted, but I still take, I still take awesome care of all them. Yeah. And then I have a third one. Can I tell you a crazy story about two of my chameleons? Yes, of

Speaker 1 1:01:30
course. All right, so the big one

Speaker 2 1:01:36
I bought from a gentleman out in San Diego, and he's probably one of maybe two or three people in the whole country that breed these things successfully. They're expensive and they're, you know, there's not a lot of them. And so he doesn't just sell them to anybody who shows up with money, like he wants to really make sure you're, you know, gonna do a good job. So you get a little chance to get to know him. While we were getting to know each other, he asked me what I did for a living, and I said, Oh, it's gonna sound silly to a regular person, but I'm like, I make a podcast. And he's like, that's a thing you can do for a living. And I was like, Oh, enough people listen to this. And he asked what it was about, and I told him, and the next time I talked to him, he said, Hey, I didn't mention it last time, but my daughter listens to your podcast. She has type one diabetes, wow. And I was like, oh, that's crazy, right now, two years later, I buy the blue one, okay? And, you know, like, again, you message with people a little bit and get to know them, and but this is a company that breeds them, not just, you know, a guy like the other one. So I texted a couple of times with the with the owner, and I don't know how much longer after I bought this one, nine months later, I got a text from that person, and they were like, Hey, I'm in the emergency room with my son. I think he's about to be diagnosed with type one diabetes. And I remember you saying about your podcast, is there anything you can help me with here? So I have three chameleons, and two of them are bred by people who have kids with type one diabetes. It's like faith. It's very strange, is what it is. It's very, very, very strange, very cool too, yes, but I'll tell you this, they're very calming and help me be contemplative. I think maybe the closest I get to mindfulness watching them just sort of exist because they are so slow and deliberate. They seem wise when you look at them, even though I don't imagine they are. But there's something about keeping them that you can't be in a rush. They're the they're like growing a cactus, like if you plant a cactus, and you have to be happy that it grew three quarters of an inch this year, because it happens so slowly, and I think they keep my heart rate down.

Scott Benner 1:03:43
So I really appreciate them.

Arisha 1:03:45
So I know you mentioned that you had to leave in an hour, yes, and we talked longer, yes, I can conclude it right now. So it's been so incredible catching up and seeing all the new things you're doing with the Juicebox podcast, from collaborations with Omnipod to new series and even a cruise. Thank you so much for being here and sharing a little bit of your journey with us.

Scott Benner 1:04:09
Oh, you're very welcome. Can I ask you a question? Yes, what if it was a terrible conversation? What would you have said at

Arisha 1:04:15
the end? I just I knew it wasn't going to be a terrible conversation. Can you

Speaker 2 1:04:18
imagine if you were like, Oh, wait, I can't read this. Did I do any better at letting you I just they talk so much like I realized that I don't really know another way to do this because I tried so hard to be quieter, but I wasn't. Was I?

Unknown Speaker 1:04:34
No, you were great. No, you're lying.

Arisha 1:04:37
No, you were great last time too. I think you're a very good speaker. I'm

Scott Benner 1:04:41
pretty awesome. I hear what you're saying. I'm just kidding. I was just joking. You think people listening and don't know me. Like, What a jerk. I'm just kidding. I mean, I'm not kidding that I'm great. I'm kidding that I said it to you. So what grade you in now? I'm a junior now. Wow, it's nuts. Yeah. It. Did you ever hear the episode From Russia with love? No, it's with a girl who, at the time was maybe, like 14. She had type one. She lives in Russia, and she, like, she got type one, and she went out and found the podcast and figured out everything she needed to take care of herself, then went back to her parents and demanded the stuff like CGM and like stuff like that. And then she was back on many years later, like, from college, and now she was like, at that point in college in Florida, I had the same feeling when she came back on as I did when you you were like, I'm in high school. And I was like, that's, no, you're not.

Unknown Speaker 1:05:35
That's weird, but you're just

Scott Benner 1:05:37
gonna keep getting older and older. Arden's

Arisha 1:05:39
21 I know? Well, I don't know, but that's crazy. Yeah, no,

Scott Benner 1:05:43
that's it's crazy. It really is. Can I ask you a question? Yes, of course. Why do you think I'm a good speaker?

Arisha 1:05:49
I just think you're a great speaker. I feel like you don't have to look or like words just come out naturally, and they're very clear and like, there's fluid. I don't know if that makes sense, but connecting topics, when you say something and you say something else, like the topics they connect, they

Scott Benner 1:06:11
feel like they flow. The

Arisha 1:06:12
flow is there, yes,

Scott Benner 1:06:14
but doesn't that when, when you're trying to interview me, though, doesn't that stop me from letting you talk? Like, aren't I? Like, it's easy to say like I'm controlling the conversation, but isn't it more like I'm building a conversation that doesn't need interruption

Speaker 1 1:06:26
a little bit? But I feel like, because I feel

Scott Benner 1:06:30
like that's the wrong thing for me to be doing while you're trying to interview me, but I don't know another way to do it.

Arisha 1:06:35
I always feel like the person that you're like interviewing speaks more than the interviewee. I'm better

Scott Benner 1:06:40
at that over the last couple of years, right in the years. Right in the beginning I was, I wasn't as good at that. Like, seriously, I would talk too much in the first couple years. But I also had, if I'm being fair, I had a lot of thoughts about diabetes that I saved up by blogging about them, that I felt like I was trying to get into the podcast, like I was pushing them into the conversations a little bit. Now I'm, I think you're right. Like, I'm doing better at the conversations, at least being 5050, and actually, some of my transcripts, they come back and, like, it's 6040, and I'm 40, and I'm like, Oh, I'm getting better at shutting up. That's awesome. I'm grateful for you explaining it to me, because I'm not doing a thing right now. Like, this is just the only way I I really know how to do, like, how to communicate, you know what I mean? Like, I tell stories. I, I, you know, I try to blend in my experiences. I try to be a little big picture and try to see where things are headed. I try to be funny, like, I, you know, because I think this stuff's not interesting. Like, Who the hell is going to listen to it? Yeah, I genuinely think that that's a mistake that most people make with their podcasts. Yeah, especially when they're around serious topics, is that they don't recognize that they need to be listenable, not just informative. Yeah, yeah. You can't be reading. You're still young. You are way better at this than you are when you started too.

Arisha 1:08:00
Yeah, I think I've gotten older too. Feel like I've gained, like, common sense.

Scott Benner 1:08:04
Do you think you'll keep doing it as you get older? Yeah, I will. Yeah. What are you getting out of it? Personally,

Arisha 1:08:10
I just think it's really important to, like, have strong, like, soft skills. And personally, I feel like I'm getting that out of it. And I really want to, like, continue and, like, build a community. When I get time, I really do try to, but doing, like a podcast episode is it takes much longer, and if you don't have a big audience, like, it doesn't reach as many people as if, oh, like, I posted something on Instagram.

Unknown Speaker 1:08:40
So yeah,

Scott Benner 1:08:41
are you saying that it's a ton of work to make an episode, and that when it doesn't reach as many people as it feels like the work took you, just feel like you're wasting your time

Arisha 1:08:53
a little bit. I just feel like, when I like, if I do this, like, this is when I do podcast episodes I'm able to have like, longer, more like, I guess, better conversations with people, yeah. But like, if I post on Instagram or something like, I'll get used but I don't think, I don't even think people watch like that like, I think if you listen to an episode, like you're listening, but if you're listening on Instagram, it's like 30 seconds. So it's not as much as like, engagement or,

Scott Benner 1:09:23
yeah, I think social media, to some degree, is all just bullshit. Yeah, I don't think that people are watching every minute of your 35 minute YouTube video about you going to the dentist or some crap like that. I think people are, like, clicking on it and going, I'm done, yeah, maybe jump, jump forward a couple of times. I think the same thing about, like, you know, there's YouTubers who do diabetes content, and somebody will say, well, like, well, your podcast got this many, you know, 10s 1000s of downloads today. But you look at that video got, you know, got more. Yeah, I was like, You really think that somebody watched that? Entire video, of course, they didn't like with the podcast, you can see where people stop listening. Yeah, you know what I mean. Like, I know how many percentage of people make it to certain, like, milestones throughout every episode. My listen through rate is really good, yeah? And like, I'm proud of that, and I'm not even saying about diabetes. There's plenty I love YouTube, and there's plenty of stuff on YouTube that I watch, but, you know, this morning, I put on an episode of, you know, some guy's YouTube thing, and I jumped in the shower, and three minutes into it, I was like, oh my god, I clicked on the wrong YouTube video. I want out of this. You know what I mean. But my hands kept touching the screen. It wouldn't work. So I stuck listening to him, and then I got done. And like, I first thing I did when I was on my show is dried my hands off, though, like, get out of that video. That's a view for him. Yeah, you know what I mean. And I just wonder how often that happens, where maybe some of those social media metrics are not as telling about what, what it means as as what you're saying. It's like a long form conversation. I had to, by the way, I thought I knew what you meant, and I did, but I had to real quick google soft skills to make sure I knew what they were.

Yeah, my parents used the word soft skills a lot, so

Arisha 1:11:15
that's, that's where most of my vocabulary comes from.

Scott Benner 1:11:18
They're banging that into your head for college. No, just in general, yeah, yeah. Communication, teamwork, collaboration, adaptability, problem solving, emotional intelligence, time management, leadership, yeah, I can see where making a podcast would help with that stuff. Yeah, for sure, your questions coming out of my answers were very good this this time around. Oh, thank you. Thank you. You didn't keyword me like you actually you helped me keep the conversation flowing. So I hope you know that you did that. Thank you. No, you're welcome. It's my pleasure. Okay, I'm gonna go hang out with my son now. Have fun. I really appreciate this. No, thank you so much for doing it. That was my pleasure. Thank you. You you. Today's episode of The Juicebox podcast is sponsored by the Dexcom g7 and the Dexcom g7 warms up in just 30 minutes. Check it out now at dexcom.com/juicebox this episode of The Juicebox podcast is sponsored by Omnipod five. Omnipod five is a tube, free, automated insulin delivery system that's been shown to significantly improve a 1c and time and range for people with type one diabetes when they've switched from daily injections. Learn more and get started today at omnipod.com/juicebox at my link, you can get a free starter kit right now. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox, today's episode was sponsored by skin grip. And skin grip, they understand what life with diabetes is like, and they know How infuriating it can be when a device falls off prematurely, and they don't want that to happen to you. Juicebox podcast listeners save 20% off of their first order when you use the link skingrip.com/juicebox links are also available in the show notes of your podcast player and at Juicebox podcast.com thank you so much for listening. I'll be back very soon with another episode of The Juicebox podcast if you're not already subscribed or following the podcast in your favorite audio app, like Spotify or Apple podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple podcasts and set it up so that it downloads all new episodes, I'll be your best friend, and if you leave a five star review. Oh, I'll probably send you a Christmas card. Would you like a Christmas card?

Unknown Speaker 1:13:48
I am here to tell you about juice

Scott Benner 1:13:49
cruise. 2026 we will be departing from Miami on June 21 2026 for a seven night trip, going to the Caribbean. That's right, we're going to leave Miami and then stop at Coke. Okay, in the Bahamas. After that, it's on to St Kitts, St Thomas and a beautiful cruise through the Virgin Islands. The first juice Cruise was awesome. The second one is going to be bigger, better and bolder. This is your opportunity to relax while making lifelong friends who have type one diabetes. Expand your community and your knowledge on juice cruise 2026 learn more right now at Juicebox podcast.com/juice. Cruise. At that link, you'll also find photographs from the first cruise. If you're looking for community around type one diabetes, check out the Juicebox podcast. Private Facebook group Juicebox podcast type one diabetes. But everybody is welcome type one type two, gestational loved ones. It doesn't matter to me, if you're impacted by diabetes and you're looking for support, comfort or community, check out Juicebox podcast type one diabetes on Facebook. The episode you just heard was professionally edited by wrong way recording, wrongway recording.com.

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#1663 Male Infertility and T1D Fire

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio -  Radio Public, Amazon Alexa or wherever they get audio.

Firefighter Kyle Kondoff opens up about male infertility in type 1 diabetes—retrograde ejaculation, IVF ups/downs, stigma, marriage strain—and his T1D Fire nonprofit rescuing diabetics in crises. 

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends and welcome back to another episode of The Juicebox podcast.

Kyle Kondoff 0:14
My name is Kyle kondoff. I wanted to talk about male infertility and type one diabetes because I looked up stuff and I could not find anything. It was very frustrating. And so I wanted to tell my story, because I've had to go through an infertility journey, and now IVF journey and everything with my wife that has been very difficult, a long road for us, but it's not very well known that male infertility is a common complication for male type one diabetics.

Scott Benner 0:46
If this is your first time listening to the Juicebox podcast and you'd like to hear more, download Apple podcasts or Spotify, really, any audio app at all, look for the Juicebox podcast and follow or subscribe. We put out new content every day that you'll enjoy. Want to learn more about your diabetes management. Go to Juicebox podcast.com up in the menu and look for bold Beginnings The Diabetes Pro Tip series and much more. This podcast is full of collections and series of information that will help you to live better with insulin. Nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan. This episode of The Juicebox podcast is sponsored by the contour next gen blood glucose meter. Learn more and get started today at contour next.com/juicebox this episode of The Juicebox podcast is sponsored by Medtronic diabetes and their mini med 780 G system designed to help ease the burden of diabetes management. Imagine fewer worries about missed boluses or miscalculated carbs thanks to meal detection technology and automatic correction doses. Learn more and get started today at Medtronic diabetes.com/juicebox,

Kyle Kondoff 2:06
my name is Kyle Condor.

Scott Benner 2:10
Kyle, you've been on the show before. Is that correct?

Kyle Kondoff 2:12
Yes, that's correct. I believe it

Scott Benner 2:14
was episode 541, wow. That seems like it might have been a while ago. It's over

Kyle Kondoff 2:19
1000 episodes ago. Of course, depends on whenever this one comes out. But yeah,

Scott Benner 2:23
yeah, I also, I don't know what that even means anymore, to be perfectly honest with you, do you remember what it was called?

Kyle Kondoff 2:28
I it was a T and D and firefighting. We talked about my firefighting career.

Scott Benner 2:33
So yeah, see if I can find it right now. 546, people, yes, if people would like to go check it out. So

Kyle Kondoff 2:40
that was, I think that was covid time too. So that was quite a ways back. Posted.

Scott Benner 2:45
It POSTED ON SEPTEMBER 21 2001 Okay, yeah, it was a while ago. 2021 yes, what'd I say? 2001 no, that wasn't done. You know, I just had, I just was driving, I was out, and I passed this sports memorabilia store, and it said, We buy and sell cards, and I have this one, possibly, like, really valuable football card. And I got it when I was a kid. I had a job in a in a baseball card shop. I was maybe 13. So this is over 40 years ago, and one day, a bunch of cards came in, and we used to get like, first shots at them, and I grabbed a bunch of them up and bought them in that collection of like cards that I grabbed, somehow is Walter Payton's rookie card. Wow. And it's in really good condition. If you trust the internet, it's worth somewhere between 3000 and, like, you know, a bazillion dollars? Yeah, I'm sure I don't have the bazillion dollar one, but I thought about, like, I've had that card for 40 years, like, 40 years, and, yeah, it just sits on my desk. And should I sell it? Like, if it is worth $3,000 like, I'll take that, you know what I mean, and or is it just this thing that doesn't have any value to me, because it's just a thing that's a story connected to a time when I worked at a baseball card shop and, like, what should I do with it? But anyway, I was going through that, and then I got lost in the idea that, Oh, my God, I've owned a piece of cardboard for 4040, years. Anyway, so 2001 when you said that, you know, oh, you just said 2001 I thought, How long ago was that? And then it hit me, that's 24 years ago. That's not even, yeah, yeah, you know, like, Oh, gosh. Anyway, you just freaked me out with time I'm wasting

Kyle Kondoff 4:36
no, no, I'll freak you out even more. We responded to a school a few weeks ago for a medical call, and we responded to the teacher, who was 23 years old, and whenever I thought of her birth date, I was like, she wasn't even born for 911

Scott Benner 4:52
that's insane. It's all nuts. It really is.

Kyle Kondoff 4:56
Yeah, it just shows world. You know, it is what it is

Scott Benner 4:59
thoughts that. Older people get to have but nevertheless, so when you first made this appointment, yes, what was your intention to come on and

Kyle Kondoff 5:08
talk about? I wanted to talk about male infertility and type one diabetes, because I looked up stuff and I could not find anything. It was very frustrating. And so I wanted to tell my story, because I've had to go through an infertility journey, and now IVF journey and everything with my wife that that has been very difficult, a long road for us. And so once I started doing that research, I found some research about it, but it's not very well known that male infertility is a common complication for male type one diabetics.

Scott Benner 5:46
Okay, so we're going to dig through that, but at some point you're going to hear us. I don't know if we're going to pivot, or if we're maybe we'll weave it into the conversation, but you've started a what? Tell everybody,

Kyle Kondoff 5:57
I started a nonprofit, and I will say I started, but it's, it's a group of us. My wife is a co founder with me, and it's called T, 1d, fire, and our mission is rescuing diabetics in their time of need. Basically, I've had it paid forward to me, and I'll tell that story. We've done it for going on seven years now. We've had the opportunity to help people nationally, as well as locally here in the Texas area, but this is we're recording in August. So it's just over a month since the bad floods that we had, and we've had quite a few people help out with that, and we were able to rescue a whole bunch of diabetics in need in the flood areas.

Scott Benner 6:38
That's crazy awesome. All right. Well, we're going to go through all of it. So, yeah, I guess a little bit of background. How old are you? How long you've been married and how long you've been trying to make a baby?

Kyle Kondoff 6:47
Yeah, for sure. I'm 37 years old. I have been married nine years. We're working on year number 10, next year in May. We have been trying for nine years. We got married in May, and it was Father's Day 2016 the month later, whenever my wife told me that she was ready to start trying for a baby. And so we've been trying for over nine years now, and it's been a very difficult journey through that time. We found out a lot of things. We've also seen the stigmas of everything, we've also figured out that everything that people say is not true, but people have a very different opinion as far as marriage and having a kid and everything else. And if you can't, then I'll tell everybody listening right now, there's not a problem with you. Unfortunately, for whatever reason, we have one in eight couples are going through infertility. We have more female infertility than male infertility talked about right now because it's an embarrassment for males. And I've actually had other people reach out to me through messenger. Not all my posts that have said, Hey man, thank you for posting about this. I'm going through this exact same thing, and then, you know, try to help them out, whatever, but have to keep everything private because they don't want their information out there. Absolutely fine, right? Not a problem. But we have to normalize the taboo topics conversation, of course.

Scott Benner 8:15
Yeah, how long were you and your wife trying before you looked at each other and said, Hey, this might be more than bad luck that this isn't happening.

Kyle Kondoff 8:23
So what they tell you is, you have to try for at least a year. So after at least nine months, I want to say we talked to the doctor, and they were like, Oh, well, you need to try for a year. You know, really, really try, basically, is how they said it. And we got married in 2016 we met back in 2012 we've had a long distance relationship most of our life together, because I was on an oil rig doing rescues and stuff like that while we were dating and engaged. And then after that, I worked at a hospital. And then I've been firefighter, so I'm gone for every two days I do it, 4896 so I'm gone for two days and then off for four days. But with all of my part time jobs and everything else, I'm not harmed much. Yeah, and so, so it's, it's a planning process. I will say in in the beginning, is it fun? Sure, after a while, it becomes a task. And I hate to say that, but it really does, you know, it's, do we really want to do this type thing?

Scott Benner 9:26
Yeah, let's do the thing and see if the band, then the baby, and then there's no pregnancy. And I would imagine that it starts to sour the experience even more that way.

Kyle Kondoff 9:35
Yes, absolutely. And so, so we, we talked to our doctors for a while, but I went and got tested. And whenever I went and got tested, they just do simple blood tests and stuff. And then after that, they said, Okay, well, here's some pills. Take these. Hopefully these will help whatever, not thinking either not thinking about the type one or just. Not paying attention to it in general, and not telling me that that's a common symptom. So next time I went to a new urologist, and this is December 2022, I went to a urologist, and they did some testing, and what they said was, what happens is you actually have your urethra closed off during intercourse, and so the semen doesn't come through the urethra, it goes back into your bladder. And I was like, well, that's honestly very weird. And so the

Scott Benner 10:35
most disturbing thing I've heard today, so

Kyle Kondoff 10:39
not to get into anybody's kinks or anything like that. That's, that's something of like, okay, well, now,

Scott Benner 10:45
is it possible there's a baby in my bladder? We just don't know it's in there. Yeah, Geez, how about that?

Kyle Kondoff 10:51
It's in it's in my urine, you know? So, so what I did was they gave me a cup, and they said, go home. And it's not the cup that you think go home, or actually, I'm sorry they told me to go home first go home. I have to do the deed by myself, and whenever I come back, then I'm going to urinate. I cannot urinate until I got back to the office. Now mind you, this office was at least 25 miles away from my house. I wasn't going to go on the side of the road or anything like that. Oh my god. I went all the way home, but it's like, okay, well, I have to pee, so I gotta hurry up and go in there. But I peed, and I came back in to the doctor, came back into the office. He goes, Oh yeah. His exact words was, oh yeah, you've got swimmers all in that urine hitting isn't that awesome. So yeah, that's, that's something that I absolutely never knew, and so once I found that out, then again, I didn't try to be this spokesperson, but I started talking about it. Okay?

Scott Benner 11:50
So I just have to ask one question, just tech contextually when, oh God, when you finish, something comes out. No, no, you don't. So were you want to all right? Were you unaware of

Kyle Kondoff 12:02
that? So it's not the fact. And let me hold on. I'll skirt back. I'm not going to say no, very little comes out, I think. And so, so that's the problem, is the fact that there's not a lot of volume. And that's what we found out through this whole IVF. And we also did IUI before IVF, which is intrauterine insemination, we'll get into all those so

Scott Benner 12:24
is the amount that you were that you're seeing that day? Is that commiserate to the amount you've seen through your adult life? Or has it lessened over time? Or is that not even a thing you've been tracking? Today's episode is sponsored by Medtronic diabetes, who is making life with diabetes easier with the mini med 780 G system, the mini med 780 G automated insulin delivery system, anticipates, adjusts and corrects every five minutes. Real world results show people achieving up to 80% time and range with recommended settings, without increasing lows. But of course, Individual results may vary. The 780 G works around the clock, so you can focus on what matters. Have you heard about Medtronic extended infusion set? It's the first and only infusion set labeled for up to a seven day wear. This feature is repeatedly asked for, and Medtronic has delivered 97% of people using the 780 G reported that they could manage their diabetes without major disruptions of sleep. They felt more free to eat what they wanted, and they felt less stress with fewer alarms and alerts you can't beat that. Learn more about how you can spend less time and effort managing your diabetes by visiting Medtronic diabetes.com/juicebox diabetes.com/juicebox, contour next.com/juicebox that's the link you'll use to find out more about the contour, next gen blood glucose meter. When you get there, there's a little bit at the top. You can click right on blood glucose monitoring. I'll do it with you. Go to meters, click on any of the meters. I'll click on the Next Gen, and you're going to get more information. It's easy to use and highly accurate. Smart light provides a simple understanding of your blood glucose levels, and of course, with Second Chance sampling technology, you can save money with fewer wasted test strips. As if all that wasn't enough, the contour next gen also has a compatible app for an easy way to share and see your blood glucose results. Contour, next.com/juicebox and if you scroll down at that link, you're going to see things like a Buy Now button. You could register your meter after you purchase it. Or what is this? Download a coupon. Oh, receive a free contour, next gen blood glucose meter. Do tell contour next.com/juicebox? Head over there. Now get the same accurate and reliable meter that we use.

Kyle Kondoff 14:50
Was I tracking it? No. Did it lessen over time? Yes, not realizing, right? Obviously, however, everything's happening and stuff so but. Again, it's also hard to tell whenever intercourse does happen exactly how

Scott Benner 15:03
much is you're not putting it somewhere where you can see it

Kyle Kondoff 15:07
correct Exactly. So, so it's difficult for me to tell all of that, but whenever they said that, it's like, okay, cool. So what do we do now? What you know? Well, you can take Sudafed, and Sudafed will help open up your urethra, so some sperm will actually get out of the urethra during the intercourse, and y'all can try that. So what they say is for us to try for a year before we go see the doctor, right. Okay, so now we've seen the doctor, go see her doctor, and her doctor says, Let's try for a year, and then I go see the other urologist. And finally, the urologist is like, Y'all might want to go talk to a fertility specialist. Okay, so this happened December 22 where I got the testing done for the urologist. January 2023 we had the first fertility consult, and they said, and this is where we did some research, but we didn't understand everything. This is how much everything is. This is what you can do. This is everything going on. Now, mind you, I was doing two full time jobs, so I was actually pulling two days on one day off, two days on one day off for a six day period, and then my wife was working on her Master's. And so we said, Okay, well, let's start this and see what happens. So we did our first IUI intrauterine insemination, which is where now, here's the more uncomfortable part. You get the mail. He goes into a room at the clinic. I just want to say this ahead of time, this room is not soundproof. You can still hear people walking outside the office, just very awkward, and you have to do the deed into a cup, and they will take that and then they will insert it into the vagina of the female that day, because they don't want any quality to go down or anything like that. So that happened in March, we got a negative pregnancy test. We were able to try again in April, we got a negative pregnancy test, and then we did it again in July. I don't remember why we didn't do it in May. It may not have worked out for the cycle or whatever, but after three unsuccessful IU eyes, they talked to us and said, Okay, so your next steps could be IVF. Okay, well, what does IVF entail, mind you, each and I don't remember the exact amount. I want to say 1750 but each IUI was $1,750 it might have been pretty close to that. Whatever it was, it wasn't over 2000 okay? And there's not really any extra medications, not really any extra things that you have to do, whatever IVF you're talking 15,000 to 30,000 depending on which clinic you go to. And so ours, because we did, don't ask me what PGT a means, but we did PGT a testing. It was an extra $5,000 but they test for 520 different diseases and cystic fibrosis and all that kind of stuff, muscular dystrophy, they do not test for type one diabetes. They cannot test for that ahead of time, unfortunately, but they'll test the embryos for that. So we paid the extra 5000 to get that done on our first egg retrieval, but our first IVF consult wasn't until June of 2024 because my wife graduated in May of 2024, we wanted to wait, because it's going to be a lot of stress for her. Now, the genetic testing was completed in July for us, because we had to find out. And again, it's not scary if you know exactly what's going on, but you have to figure out how everything is. We had to get tested for AIDS, for HIV, for all those kinds of things. They want to make sure we're all clear for that stuff. Even though we're married, still have tests for all that as well as they're testing for other things. Yeah. So, so we do the medication. She starts, excuse me, let me correct, because I don't want to be corrected. She starts the medications for the egg retrieval coming up the next month. That's July of 24 I am going to have the easiest part. I'm going to do the same thing I did for IUI three times, and I go into this room and give my sample. The difference being this time, they're going to take the sample, they're going to test it, they're going to do all this kinds of stuff, and then they're not going to use it right away. They can actually freeze it and do different things. So August 14, 2024, so just over a year ago, we had the first ever retrieval, and that is $20,000

so we're already looking pretty close to $26,000

this time we did the three PGA tested embryos came out. But what happened first was she had 16 follicles. 12 were retrieved, nine matured during that process. Mind you, this is a three. Four week process, we had four blastocysts, and then once they tested them, three, PGT, a normal meaning that they have one that's just sitting there extra. The other thing that they do is they grade these things, A's or B's, stuff like that. Okay, and I don't know exactly what they were, but through this, PGT, A, we also know the gender. So, oh, you get to pick, yeah, exactly so. So instead of me knowing the gender, because this is going in her body, she wanted to, we wanted to have some sort of a surprise, I would be the one that didn't know. So she got to pick which gender went

Scott Benner 20:35
in. I just want to say I saw, I saw that coming, cop, but, okay, go ahead.

Kyle Kondoff 20:39
So, so we had three, three good ones after all that, right? 16. And that's typical of what happens. You get about 1/3 1/4 amount. So 16 follicles. And so we had the first one. So the first attempt at an embryo transfer took place September 19, again, coming up on a year from that. But she took estrogen to suppress the ovulation, and and the ovulation still occurred. This happens point 3% of the time. This, this was a point 3% chance. And so because of that, because she ovulated through it, the cycle was canceled. So we go to the doctor. At that point, we see the nurse, and she starts talking to her and everything, and she talks about how she ovulated through the medication, and she goes, Well, I mean, it's your your hormones and everything. They're so off and stuff, and that's why you're infertile. And we both kind of look at her, and she looks and she's like, not me, him. And she's like, Oh, well, you're infertile too, then. So we find out, Oh, we're dealing with double infertility.

Scott Benner 21:44
Awesome. That was right. That wasn't just somebody guessing out loud, no, no.

Kyle Kondoff 21:50
She's because of the hormonal changes and everything that she's going through because her, I won't say her cycle is not normal, but all of her hormones during her cycle is not normal.

Scott Benner 21:59
Yeah, let me stop you for a half a second here, because I want to tell you, this is obviously not me saying this, but the internet disagrees with you that the restricted uretha urethra has anything to do with type one diabetes. Yes. So explain that part to me like because what it's saying here is that you could have had an injury. There could be a structural defect, something like that, is that not the case? No, no, it's

Kyle Kondoff 22:24
not the case for me, unless you want to talk about, you know, the time, whenever I was a kid, like every male, we got either kicked into balls or

Scott Benner 22:33
had a ball. Kyle, let me give it to you here. It says trauma or injury, like a pelvic fracture, catheterization that might have gone wrong, endoscopic procedures, an infection, like an untreated sexually transmitted infection, like gonorrhea in the past, inflammation, sometimes related to conditions, like other conditions surgical history, like prostate surgery, radiation, that kind of thing you would have seen symptoms of weak urine stream, straining to pee, spraying stream, incomplete batter and bladder emptying, or more frequent UTIs. None of that happened to you prior.

Kyle Kondoff 23:06
No. Nothing happened and and I got it from all the medical professionals that said, Oh yeah, no, this is a thing for diabetics, and that's why I said, Because looking up that information online just shows how much, again, our healthcare system is failing us, and the lack of education of these complications, just the list of complications, keeps on growing for diabetes in general, not just type one. Yeah, so again, that's, that's why I said, you know, it's, it's frustrating because I put that out there, and other type one diabetic males are like, are actually some females told me that their male is having it. And I said, go get tested. You know, figure this out ahead of time, because I even had somebody. I went to a fire conference and a few type one diabetic first responders. One of the females came up to me, and she's like, so what you posted about the other day, like, I'm kind of worried about my guy. And I said, if you're worried, and if you talk to him about it, go get tested. It's not much to go get tested. In fact, it's preventative more than anything. So insurance might even cover it. Who knows? But no, I will say, I live in the great state of Texas. Unfortunately, they don't cover anything with IVF or infertility or anything like that insurance wise. So everything's out of pocket for us, but it depends on your state. Depends on your insurance, all the good stuff, but, but you can get tested. You can figure it out ahead of time to see how much that complication is affecting you. Because if you're 2223 years old, and you start trying to have a kid, then it gets frustrating later on. Like I said, I'm 37 we're almost to your number 10. Doing that well, just past year number nine. But can

Scott Benner 24:45
I take a little detour there and tell me, yeah, a little bit about the like, what are the implications of I get married? You know, we want to have a baby. We can't. Like, at what point does it stop just being like, Oh, this is frustrating. And then it goes to, maybe it's a medical thing, and then it doesn't happen again. Like, at what point do you do you think that your your mind tells you, like, I still want to have a baby. I can't seem to do it with this person. Like, maybe this part is, like, you know what I mean? Like, does it cause marital issues?

Kyle Kondoff 25:15
It does. It absolutely does. Throughout this time, we've had big marital issues, not to the point where, you know, we're, we're gonna split up or anything like that, but it's caused financial burden. It's called mental burden, and it's caused the physical burden, yeah, not just for my diabetes and the way I'm eating and everything, but her stress levels and sure, everything as well. You know, there's, there's extra weight gain, and I'm not even into the extra hormones and stuff that she has to take. Like, I said, the male has the easiest part, takes 30 seconds,

Scott Benner 25:46
but, but we have Kyle, I was gonna say, not to mention, too, like, kind of ruining, like, what sex is, yes, you know, like, which is a thing that you're hoping to keep going as long as possible, so that you because that helps keep your connection together, too,

Kyle Kondoff 26:00
right? Yeah, and, and, I think one of the earliest depictions that I can remember, at least being on TV, is friends, right? Whenever Monica pulls Chandler and was like, I'm ovulating, and they need to go do it right away. I think the same thing happened on How I Met Your Mother, Lily pulled Marshall aside and said that like she was ovulating while she was teaching a class or something like that. It doesn't happen like that. TV makes it sound like they have a 30 minute window. Yeah,

Scott Benner 26:25
this is fun. Yeah, there's, there's a two

Kyle Kondoff 26:29
to three day window in there. You know, just like more depictions have come out on TV and shows and stuff about type one diabetes, I think more will talk about infertility and things like that. But again, it's a taboo topic that nobody's speaking about. So it's it to me, it's it's just it was important to tell the story, to say, Hey, this is what happened, but also to know that there's other options out there. And I've said this publicly, my wife has said this publicly too, but she works for the state, okay, of Texas, and she investigates foster facilities program manager and does things, and has done things for a long time with foster care facilities, as well as watching foster kids and stuff like that. And because of her background, and because I'm not the last cond off, but I'm the last condo for my grandfather, I would like to have a biological child. We do not want to adopt. We do not want to foster. So many people have pushed that out to us, and believe me, we understand all the avenues of everything. We don't, yeah, exactly. We don't put anybody down on anything that they choose. This is our choice, though, and so that's the that's the hard part too. Is like, every single time you try to inform somebody about that, it's like they always come out and say, well, there's always adoption, there's always

Scott Benner 27:47
popular. There's so many babies out there in need. You said I got, I got a mom and a dad right here in need too, right? Yeah, we have like, desires for our life as well. Yeah, I hear that.

Kyle Kondoff 27:56
And at a certain point I'll be honest, I've already had this conversation with my wife, and I hope by the time this comes out, we would be pregnant, but, but who knows? We have had the conversation that it's getting time of when do we stop? When does it become too much? Because it's a physical as well as a mental and definitely a financial burden for us to keep on doing this, but we're we're still trying, and we're also blessed to where we're able to try. We don't go into debt like this. But I do know people that have tried 1011, times, oh God, for IVF, and you're talking 200 grand, and they still don't get a kid, one of my friends, who is a type one. She, I don't know exactly how many times they tried, but it was after 10 to 14 year period in there where they were trying to have a kid. And she finally has a baby boy. I say a baby boy. I think he's in middle school now. Who knows, but, but he's been around for a while. Well,

Scott Benner 28:59
there's also a time factor. You can't like, you don't want to be 70 raising your 10 year old either, right? Like, yeah, exactly. And at some point you got to feel like, what? Like you're going to get on with your life and find other avenues to put your passion into, yeah, instead of just being disappointed all the time. You said a couple of times about, forget how you put it exactly right. But the stigma around it all. Did you feel that? Like, was there a moment where you thought, like, I can't believe I can't get my wife pregnant? Did that hit you that way? Are you a little

Kyle Kondoff 29:27
Absolutely, did it really? Yeah, never once did, until we went to the doctor. Never once did we know who was the problem. In my mind all the time, what if I'm the problem? I'm my gosh, what if she's the problem, you know, whoever it is, like, we're gonna feel bad, of course. And

Scott Benner 29:44
so what's the end of that? What if, like, what if it's me? Then that means, like, what did you think it meant that it, if it was coming from your, you know, from your genetics,

Kyle Kondoff 29:54
it's my fault. I'm the reason why we can't get pregnant. She can't do it. And. Yes, I'll be honest, I never thought it was diabetes, not until the the doctor said, so. So it was, to me, your failure, right? Because, I mean, again, in the in the Bible and everything else but man for so long, man and woman for so long, has made a family. That's not the reason why we were put here on Earth, just to procreate, but it's one of the things that we can do.

Scott Benner 30:21
Feels like a main thing that you you wanted to do, and maybe even felt compelled to do, and now she wants that as well. And even though, like I would imagine, academically, she wouldn't blame you. But the concern is, is that one of you is going to blame the other one if the quote, unquote fault lies on their side.

Kyle Kondoff 30:40
Yeah, yeah. And I mean, we were good enough that we didn't have that issue. I'll tell you this just on a personal level as or actually a professional level, excuse me, as a first responder, it was more difficult to go on calls, having to deal with kids, having to deal with pregnancies, having to deal with pregnant women, also having to deal with troubled kids or calls that were difficult. Me and my crew, we went through nine pediatric deaths in seven months, and so that was very tough whenever that happened, because we're trying, and there was a lot of different reasons. We had a co sleeping mom, and I don't blame the mom, but at the same time, it's like, oh my gosh, this baby now doesn't have a life because this mom fell asleep on this kid, and here we are trying to have a kid, and honestly thinking it's not fair, you know, and that's that's wrong for me to think that. But

Scott Benner 31:38
still, yeah, I was gonna ask you, though, did the anger ever take over and you start seeing people in the world, you're like, oh, great, this crackhead can have a baby, but I can't, you

Kyle Kondoff 31:45
know, sometimes, yes, yeah, sometimes yes. Like, like, how can you have seven kids? And also not care about your kids in a way, because of everything that, you know, we saw, and not only me as a first responder, but she had to deal with it through work

Scott Benner 32:02
and everything else. Yeah, her job almost seems like it's torturous. There's there.

Kyle Kondoff 32:07
It takes a special person to do that. I will say that she's, she's had some crazy, crazy calls throughout the years. We've actually responded to a couple of the calls they were in some of our areas before.

Scott Benner 32:17
I didn't even just mean, like, the the horror of humanity. I meant like, while you, while you're sitting there thinking, like, I'd like to have a baby. And, yeah, right. And here's the world doing this, absolutely, it's upsetting. Well, I mean, did you try that one time where the the ovulation happened anyway? Did they waste the egg? Or do you still have that one?

Kyle Kondoff 32:37
So no, the cycle, it was just canceled, and so the egg wasn't okay. We still have it implanted, because we did still have it at the time, right again, that was coming up on a year, September 19. What's happened since then? Then the second attempt after that cycle was canceled, and everything we did another temp at embryo transfer that happened on October 4 last year. She took birth control to suppress follicle growth. Follicle still grew, and the cycle was canceled. So now we're two months in, and it's like, Okay, God or the universe or whatever you believe in, what is happening? Very frustrating, because now this is two attempts. Now, I will say, because the cycle's canceled, this doesn't count towards the cost. So that is always my frustration is like we're doing this and now we're not getting our money's worth. So

Scott Benner 33:31
also it's just, it's, I would imagine that the build up and the the anxiety and everything else that happens, you know, whether or not the cycle completes, and you actually try the implantation or not like all that still happens, right?

Kyle Kondoff 33:42
Yeah, absolutely, absolutely. And my body's not going through the changes that hers is. Sure I'm still going through the stress and stuff like that, but she is taking the medications. And I joked with her, and she really doesn't like this joke, and I can understand, but I told her, she knows what it feels like to be diabetic, because she had to give shots in her butt. She had to give take different medications. She had to do something every single day, and that's like almost a whole cycle. So it's, it's a lot of different things that she had to do, but different things help the follicle growth and and everything else. But October 4, we did that. We, I guess, took a break for November, just because the timeline doesn't show it. So December 2, we had our third attempt yet at an embryo transfer, and the first embryo was successfully transferred on December 6. So we stood around and waited, and I think we went on a vacation during this time and came back from vacation, and then finally they said, Dennis, you're pregnant. We have the positive test. They do it by the HCG number. She got a blood test to confirm that her hCG level was at 34 so three days later, because they want to test her so often. Second positive pregnancy test, HCG was six. Four. So it doubled. That's awesome. So we go on the weekend. Now, mind you, I'm saying December 20. So So what's right around the corner Christmas? So December 23 two days before Christmas, she got a phone call. Third pregnancy test showed an HCG lowered to 34 so what happened was, it's called a biochemical pregnancy, but it was essentially a miscarriage, okay? And so we experienced a miscarriage that was very difficult. That was also very difficult because we found out about it two days before Christmas. We were able to tell the family, close family and friends at that time, but we didn't let social media know until March, because, again, I've been very open and everything, but I'm also in this with my wife, and so whatever she says goes, Yeah, right. And she finally was able to tell me in March that she was good to go. So what they wanted to do was they wanted to do a mock cycle at the beginning of this year to try to figure out everything going on, she's going to get an endometrial biopsy, and they check for endometriosis as well as endometritis, how receptive the uterine lining is to implantation, to make sure that everything is good. So luckily, the endometriosis and endometritis was negative, so we didn't have a problem there. And the progesterone that she was taking, we had a positive response to that, as well as the uterine lining. So so everything looks like it's okay for the embryo to go in, for everything to be good, whatever. So she decided she's ready again. We start the second transfer cycle in March of this year, the second embryo transfer, and it didn't take at all. So April 8, which again two days before Christmas. Now, April 8 is two days before her birthday. She finds out that it's negative and it didn't take. So it's like the two days before something is just not good. Kyle's

Scott Benner 37:02
like, I look at a calendar and if it's 48 hours out, I just sit in my bed and I don't move. Yeah, are you trying the good old fashioned way too, in between all these times? Yes, yeah, yes. Okay,

Kyle Kondoff 37:13
still difficult with my schedule and everything else, but it's still not progressing in the way that we want to, of course, by

Scott Benner 37:21
difficult, you mean that you can't do it as frequently as you would like to in that scenario. Absolutely. Yeah, okay,

Kyle Kondoff 37:27
I again, I have one full time job where I'm two days on, four days off, but I really have three part time jobs, plus consulting for something else, and then I'm a ambassador for ever since, for my CGM. So I do do a lot of different things, not to mention, I run a nonprofit, right? So yeah, so I've been, I've been very busy doing a lot of things, but still this has been foremost on our mind for coming up on a year and a half. And so like I said, it's been, it's been frustrating because it's been over nine years having to deal with this, trying to figure everything out, and we still hope to get pregnant in the future, but this next step, because that was the second embryo transfer, what they said was, we don't want to use this last egg right now. We want to because apparently those two first ones were a eggs, or maybe a B positive, I don't know, a B plus, I think, a bit like school, and this one is a b minus or C. This isn't as good. And so instead of using a bad one, we're going to do another egg retrieval. So we're about to go to a consult. Because of that, we have to do the blood tests again. They have to test you every 12 months to see if you have the STDs. Have anything else, genetic testing, stuff like that. And so we'll get all that done, and then I'll give sample again, and we'll see how all that goes. Okay, going back to the male infertility, part of it, the Sudafed helps open up the urethra in that way again, according to the doctor, that more semen comes out. And the other thing that helps with that is time they say don't masturbate or don't have intercourse, whatever, for 48 hours before you come in here and do it. The nice part is now I've gotten to the point where I can take the cup home, go do it, not in that room with with everything else, because it's awkward. And at the same time, you also think, this is a fertility clinic. How many guys have been here?

Scott Benner 39:22
It's awkward, and I'm worried. This isn't this room's not clean, is what I'm worried about. Yeah, I'm sure they give it a nice wipe down. Don't worry. I'm sure they do,

Kyle Kondoff 39:32
I mean, but it's something that's not talked about, and it's something that's not thought of in the realm of man. It's a lot diabetes and male infertility and all that stuff. So still hope we do get pregnant and stuff, but it's led to, you know, a lot of different things, one of those being education and stuff like that, to try to help people, because it's been frustrating for us to have to go through it. But I don't want to see anybody else have. Have to go through, if you and your wife

Scott Benner 40:01
ever sat down, like, in a, in a, I don't know, like a light hearted moment, and said, Can you imagine if we eventually get pregnant, the kid comes out, and it's like a real shit, you know what? I mean, imagine Kyle if, like, after all this, like, one day you look at the kid and go, like, uh, kids a lot, you know? How are you gonna stop yourself from going, let me tell you the story of how hard it was to get you here and now, this is what I get now. I'm sure everybody's everyone's children are lovely, don't worry. But have you ever talked about stuff like that, like the more abstract stuff?

Kyle Kondoff 40:33
Oh, we absolutely have, and other other things as well. Something that happened within the last month is my sister in law and niece moved in with us, and just so happens, on Monday, 25th her birthday was the third her birth. Her third birthday was on the 25th Okay, and so so three years ago, we actually went to the hospital and were there that the day that she was born, and got to hold her and everything like that. And so we've watched her grow up for different reasons. The Father is not in the picture, not on the birth certificate, everything else, and so I am the main male figure in her life. And she's still my niece. I'm still uncle Kyle, but she's my niece, right? This is, this is almost like my kid, and now she's my roommate, and so we have fun. And everything else difference being that it's my wife and her sister. So her sister is the mom and she's the aunt, yeah. And so there's, there's other female,

Scott Benner 41:33
there's the yeah, there's a step between your wife and the niece, whereas with you, it's just you, yeah,

Kyle Kondoff 41:40
and, I mean, there's still, now, my other sister in law, she's engaged, and so that uncle, future uncle, is going to be in the picture as well. And, you know, at one point, hopefully we compete as to who's going to walk her down the aisle, or whatever else, or maybe my sister in law meets somebody else, we'll figure everything out, and hopefully 25 years. But, but for right now, it's, it's awesome to be part of that life and see this kid grow up and

Scott Benner 42:06
she's, she's making you want this idea of a child even more.

Kyle Kondoff 42:10
She actually, no, because, I mean, I've watched her grow up being dead, honest, for me, it's been financially, emotionally and mentally, physically draining enough to have this process go on that I've come to terms myself with us not having a kid and being okay with that. I'm doing this with my wife because I love my wife and I will keep on doing whatever she wants to do. But that's why I have all the jobs. I have the extra jobs so that we can pay for this. I have this stuff so that we can satisfy the want to have a kid, because it's not a need. And I say that selfishly, but at the same time, it's true, right? There's plenty of people out there that don't have kids, but it's something that, obviously we've, we've gone through and have gone through for going on nine years. It's

Scott Benner 43:06
very honest of you to say, I also want to tell you that if you think coming up with 20 grand to harvest some eggs is tough, wait till that egg wants to go to college 20 years now you're gonna, you're gonna be, you're gonna be wishing somebody just asked you for $20,000 Yeah, my gosh. Okay, so in this entire like, drama that's been going on for years, how did you and when did you decide to start a nonprofit? What made you think, like, I'd like to start a nonprofit to help people?

Kyle Kondoff 43:35
Yeah, so think I mentioned it before, but T Wendy fire, our mission is rescuing diabetics in their time of need. So it's called T windy fire because I'm a type one diabetic and a firefighter, tried to think of something catchy, like, Hey, let's go with this. And so it was originally tea windy Fire Department. Don't get it confused, government wise, or anything like that, but we officially started the nonprofit in 2021 got the papers all done and everything else, but I've been doing it locally since at least 2018 okay, what? I actually went back and looked at my Facebook messages from the first person. This is a pay it forward. I was gifted eight vials of insulin by somebody back in July of 2018 whenever I was in need and I wanted to help other people, and that's the way that I got into firefighting. That's way that everything happened in my life. So I started a nonprofit doing that. First, I just did it out of my house and just collecting stuff or connecting people, whatever, like I said locally here in the San Antonio area, but now we've progressed to national. Now we progressed, and I will say International, because we actually had somebody send stuff from Canada, which was pretty cool. Totally different insulin too. But we help people by getting the supplies that they need, as well as doing other things. So. We actually have our website live today, which is awesome. T when D, fire.org, and so super stoked for that. And hopefully by the time this comes out, there's a lot more things on there. But I have been helping people for a very long time, just by community aspect, because people have donated supplies to help others. And so now it is a community driven project through the nonprofit and through the help, and actually posting on Juicebox, because that was one of the most, the best helping groups.

Scott Benner 45:32
We got good reach in there, for sure, the

Kyle Kondoff 45:35
supplies, yeah, we have had since July 9, and again, it's August 25 we haven't gotten any in probably a week, but we've had 68 packages delivered from across the nation with supplies, and I'll give a shout out to your state, New Jersey. Specifically, we got a flipping barrel. And I'm not talking about a small barrel. I'm talking about a barrel delivered to the house, to where the UPS driver had to get a dolly out to wheel this thing up to the house, because there was so much stuff.

Scott Benner 46:10
I don't know why Jersey gets a bad rep. We're reasonable people here. That's awesome. How does it work? Like because I'm Yeah, I mean, you know this, I assume, because it's gone back and forth so many times. But I'm in an awkward position, because Facebook doesn't like it when people give each other medical supplies. Correct, yeah, it causes a real problem. Correct? If I didn't police that, it could really, it could be a bad thing for my group. So anytime somebody does that, we take those posts down, you know, we say, like, I'm sorry you can't offer medical supplies. Can't ask for medical supplies, but, but what I've kind of learned to do as the as the person running it is, first of all, no matter what I do when this isn't me complaining, but no matter what I do, someone's mad at me. So I can never win. I can never win there, which is fine, I've gotten past that in my life. But what I do is, when there's more, like a natural disaster thing. I've learned that like those posts, if I leave them alone, those seem to go okay, right? But if somebody is just like, look, I went on vacation, I didn't bring enough of this. Can somebody please? I can't let those posts stay up, right? And so I'm stuck removing them. I want to ask you, have in your perspective, have I been reasonable about your posts?

Kyle Kondoff 47:24
Oh, yeah, absolutely. And

Scott Benner 47:26
trying to gage, you know what I mean, like the whole, yes, yeah,

Kyle Kondoff 47:30
yeah. And that's why, you know, I haven't put on there. So I will say this, and it's not to compete with you, but everybody's got to have their own Facebook group. Is I've got to create a T Wendy fire Facebook group. I have a T, 1d, fire Facebook page, but we need a group where we can talk about it, right but early on, and this may have been from somebody else right now, it's in my head only that, but insulin is called Life water. You have to have keywords for different things so that the algorithm, or the whatever Facebook

Scott Benner 47:58
until they figure out that's what you mean by that, and then exactly

Kyle Kondoff 48:03
there's buy, sell, trade, all these groups, whatever, I will say, all those people are doing stuff illegally. We as a nonprofit, and I know this, and I'll say this on a podcast, and I've already said it on our news, we are doing stuff illegally. I could have the DEA come knocking on my door any day now. Now, somebody that I did meet whenever I was out in because I was out in Kern County, and that's whenever I wrote the Facebook post that I did and either shared in the group or wrote in the group. But I was on the banks of the river, and I was watching this, and I was just thinking, what if somebody was diabetic at the time these rising waters, they came in an instant, whatever. But what if one of these kids is okay, but all their supplies are gone, you know, and that's what got me thinking about that. And again, push more for T Wendy fire, that I was already doing for the last seven years. I wanted to put it out there and say, look where all your stuff is going. Look what's happening, and try to put the progress through all this time. But who I met out there was the United Cajun Navy. And the United Cajun Navy told me specifically, they said, Yeah, the government absolutely knows we're doing things. The government absolutely turns their head whenever we're crossing the red tape that they can't do. And in fact, the United Cajun Navy guy that I met out there. I started telling the other guy about T Wendy fire, and he stood up out of his chair and turned around and he said, Hey, man, I really appreciate what you're doing. I said, Oh yes, sir. I said, these people need help. He said, My daughter is a type one diabetic. And I was like, Oh, okay. So I ended up talking to him for 15 minutes about everything, and they have a 200,000 square foot warehouse that he said, I'm going to keep your car. We'll be in touch and stuff. But if people need supplies, how can they get a hold of you? I said, Here's my information. Absolutely have them reach out to me. That was that haven't heard anything right now, but doesn't mean that I won't in the future, because, knock on wood, we've had. A decent hurricane season so far.

Scott Benner 50:03
So do you have supplies somewhere and it when they're in need, you take them, or do you wait for something to happen and then rely on donations that come in to help those people? Both, both

Kyle Kondoff 50:13
what we had, I have, I had nine of the Costco size black totes with the yellow lids. Everybody knows those big storage boxes. I had nine of those. And this is, this is how the flood time actually progressed. Und fire gave us the opportunity to grow. Is we had nine of those boxes. Now we have 30, and that is due to the donations of everybody throughout the time, plus the stuff that I've already taken over there, delivered to Kerr County, as well as San Angelo, which is 200 miles away. Kerr county is 35 miles away from me, so I've gathered stuff over time from people. And here's what I tell people, and this one's funny whenever you say it on the podcast, and stuff is, I've had people send me animus supplies. I also already had some animus supplies. So I had g4 g5 that I finally threw out. I've got insulin that I finally threw out that said 2018, 2019, on it. It's been refrigerated the whole time, but all this stuff has been accumulated throughout the time because of the cost of everything. We probably had $70,000 worth of supplies at one point, I did calculate it all, and since the floods, I haven't calculated everything, but I know that we have at least $300,000 worth of supplies. We have at least five boxes of Medtronic five boxes of tandem supplies, two to three boxes of Omnipod supplies, g6 is G sevens, freestyles, and we have tons of syringes, tons of lancets, tons of test strips and meters as well as adhesives and everything else. You know, anything you can think of. Diabetes wise, somebody has sent us. We got diastics too. So

Scott Benner 51:54
keto sticks. So listen, instead of bothering me, if you have stuff you want to donate, just go to Kyle's website and figure out how to do it there, like leave me out of it for God's sakes. Yeah?

Kyle Kondoff 52:03
Somebody, somebody actually did tag us the other day, which is awesome, because that means that our name is already getting out there. Yeah, well, it's very cool, really

Scott Benner 52:09
cool. I can't tell you how much I wish that this wasn't an issue, because I do think that my group is so big and active that it would, that it really would be very valuable in these scenarios. And daily, somebody's like, I have these. What do I do with them? Also, by the way, there's an overlap with online scammers right now, which they love. They love to put up pictures the CGM and pump supplies, and go, Hey, I have this extra stuff. I don't want it to go to waste, like, you know, and then they, they try to bilk you out of shipping. Usually, that's usually the scam, right? Like, I just thought I'd like to give it to give it to you for free. Just send me $20 for shipping, and then they, then they go away and they keep your 20 so, like, that's even tough, because I can't police it to that level. Like, for sure, I have a lot of blanket policies that I have to, I have to tell you. Like, I tell everybody listening, I wish they were more nuanced. But, you know, it's just me, so I don't have time to be more nuanced. If you're offering stuff for free, your post gets taken

Kyle Kondoff 53:06
down. Yeah, no, and it's absolutely understood. I look at that stuff and I see that I have actually been part of a group before that was run by our local JDRF, and then they had to step off, and I became the admin for it because somebody was doing exactly the same thing in the area now, and I will say I've got support through breakthrough now, obviously JDRF before I've got support through them to where, if they know somebody's in need, they will reach out to me. But the reason why T Wendy fire came about is because of pay it forward. The thought process behind it was that we're going to become a nonprofit pharmacy, and that's a lot of red tape as well as you have to have a pharmacist, you have to have an endo or an MP, or somebody that takes on that role to prescribe this stuff, and then they would actually get a prescription instead of the supplies that we already have. And that's not a no benefit to me, because I don't get rid of this

Scott Benner 54:03
stuff that we have. It's also no benefit to somebody who's floating down the street right now and need something right, correct? Where are they gonna go? To the pharmacy? Right?

Kyle Kondoff 54:10
I've also been contacted by several other people that are doing this across the country, and seen a couple other nonprofits that that have this rolled into whatever they're already doing. But, no, it's illegal, but people always put and I don't want to bad mouth anybody, but I want to say this for real, because this is exactly where it goes. People put insulin for life on things, and it's a great organization. However, what you don't realize is, because of the legalities of it, insulin for life sends everything overseas. They cannot give anything to anybody in the US.

Scott Benner 54:42
I think I heard that before, right? Yeah, their stuff, yeah, yeah. It goes overseas,

Kyle Kondoff 54:46
yeah. And still goes in need,

Scott Benner 54:49
yeah, it's going somewhere, not just sitting in your cabinets and rotting, right?

Kyle Kondoff 54:53
For sure, yeah. And I've got no problem with anybody else that does this, man, it's the problem that I have is whenever people start charging. Because exactly what you said, not only is there scammers, but if you look and it'll probably come up on suggested. Now, am I sponsored on Instagram or Facebook? Is the We Buy diabetic test strips type thing? And people are scammed by that too. I've had people reach out and be like, hey, I want to buy test strips from you. And I said, No, thanks, you know, and that's not illegal because they're not prescription. That's what people don't understand, is the pumps, the CGM and all that stuff, unless you find somewhere that you can buy it over the counter, and you can't even buy the transmitter Costco anymore over the counter, then you can buy the test strips, you can buy a meter, you can buy the syringes and pin needles and stuff like that over the counter. So you can give that stuff away. You can also sell it, although it's kind of dumb to do so. But why not have something that everybody can have, like the pumps and CGM? Because that's what people need the most.

Scott Benner 55:54
What are the rules that you have to stick to so that you can do this? Like what makes it legal versus illegal?

Kyle Kondoff 56:00
So it's not so much legal versus illegal for me, it's whether or not somebody can show me that they have a prescription for something. Because I just want to Cya in a way that I know they're not going to go sell it. Yeah, I know that. And like I said, I've said this on the news before. I know that what we're doing is illegal. I would not be surprised if DEA comes knocking on my door, but they have a lot more other things to worry about. So Drug Enforcement Agency, for anybody unsure, but I mean, that's what it is, because they are prescription drugs,

Scott Benner 56:35
yeah, so that anybody who's doing this, anybody who's collecting, yes, medical supplies and redistributing them, even if it's in, you know, a time of crisis, they're breaking the law.

Kyle Kondoff 56:47
Yes, okay, yeah, yep, we are absolutely breaking the law, because you cannot give somebody else's prescription to somebody else.

Scott Benner 56:53
How do you get a nonprofit distinction for this thing? So

Kyle Kondoff 56:57
the nonprofit is created to help people in a way, the decision that we made through the floods was to go through and say, Okay, we're going to give supplies away. But rescuing diabetics in their time of need covers a lot of things. Something else that I've seen lately is the national nonprofits don't really want to have in person events. Don't really want to help the diabetics of today. And I say that as somebody that's been a part of one of those, I am still a board member for breakthrough T and D. I was the volunteer chair and community engagement chair for my chapter, and watched a lot of things happen nationally. I even talked to Aaron Kowalski about my nonprofit and said, not that y'all aren't doing anything, but our nonprofit was created to help the diabetics of today, and when I say diabetics, I mean all diabetics, but we have educational resources. I've created some myself. I'm working with first responder center for excellence on an educational resource for type one first responders, as well as for fire chiefs, because, as I said on episode 546 I was unsure that I could get a job. And there's a lot of guys that have contacted me throughout the years that were unsure that they could get a job. And so want to make sure that chiefs know that, because the largest fire department in the world, FDNY, doesn't allow type one diabetics. And so just trying to help out with that knowledge, but also, eventually you're going to create something for male infertility. These things will be available on our website, but we need to help people with emotional stress and mental stress. I hope that we could raise a whole bunch of funds and stuff. My job is firefighting, and I don't plan on taking this off as a full time job, because I love my job as firefighter, but I want to help people however I can. So if we can raise funds, then we will do our best to help people, but it depends on exactly how big we grow. I don't plan on having fundraising events and stuff like that for a very long time, though, but just get togethers and things of that nature, something that has come about recently through this nonprofit and through the flood stuff and everything else, is how much we need to help everybody across the country. And so we built a T and D Fire Rescue network. We've contacted other first responders. We got I made a call out, and I think I put it on the Juicebox podcast group as well, but trying to ask people, if you're a first responder, can you please contact me whether you are a first responder, whether you're a type one for type one diabetic first responder, or you are a family member of a type one diabetic and you're a first responder through that, and I don't have a problem with it. I've had a mental therapist contact me. I've had a PA contact me. I've had an NP contact me, and I think we have a couple of those. So now I move it towards medical professionals. If you're a medical professional and you want to help people that has a type one connection, you're impacted by by diabetes, excuse me, not even a type one connection. If you're impacted by diabetes in a way, and you're a medical. Professional, then you can be on that rescue network. I've had lay people, regular people, reach out and say, Hey, I'm not any of those. But how can I help? That's great, but right now, I want to build our network, our rescue network, right of the medical professionals to help out. And through that, we're going to have connections. We already have a group me where we all talk and everything, but we'll have a call out whenever something happens in their area, and we say natural disaster, but also if somebody needs help some other way, then they will let us know. And I am the one who's holding everything, and that's because we don't have a central location right now. The central location is San Antonio, Texas, but I hope to have a north, east, west and south location that we would hold stuff, but we have a storage unit here, and that's where everything is.

Scott Benner 1:00:47
I wish you luck. I hope, I hope you can get it set. I mean, it really does feel like it's incredibly needed, and at the same time, it feels like it's roadblocked every time you try to do something, even just a person like me is under pressure to go, Oh God, no, you can't post that. That has to come down right now and take it down like I can't imagine the pressure you're feeling from what you're trying to

Kyle Kondoff 1:01:07
accomplish. Yeah, and there's got to be a I don't give a crap attitude about it, I'll be honest. And I've had that for a long time because, and I mentioned this before that. I said it on the news. I've watched people I don't care if DEA comes knock on my door, because I've watched people struggle as to whether or not they could feed their families or buy their kids insulin. And that happened locally as well as nationally. I've watched the insulin rationing happen for years, and watch the different people die from it, and seeing the social media posts of that person that died, wherever they died, because we had quite a few of them for a win, a rash of them, really, for a bit. I don't know if that's a problem now, with insulin prices going down. However, whenever there's somebody on Instagram that comments on my stuff and they say, Oh, wow, this is or UK, but it's great that you're doing this. I just can't believe that you have to do that because they don't have that problem in England. They don't have that problem in Germany, they don't have that problem in Canada. This is a US thing, and I won't get into politics and all that stuff, but it's crazy. If

Scott Benner 1:02:18
someone did come knocking on your door, what would they charge you with, I don't know.

Kyle Kondoff 1:02:24
Maybe a really good question. It could be distribution. And who knows what exactly that would be.

Scott Benner 1:02:30
Technically, you're a drug dealer. Is that, right? I

Kyle Kondoff 1:02:33
mean, yeah, I guess so. Because, because, again, that's my problem with it, right? Is, I mean, is that drugs? No, it's not drugs. And I say that whenever I do my diabetes, 101, or whatever talk you want to call it is Insulin is a hormone. They categorize it as a drug. Ever since Banting and Best made it so that they could sell it. But of course, they only sold it for $1 so that everybody would have access to it, and it just got price gouged like crazy, yeah, Now the price has gone down to $35 a month, or $35 a vial, whatever it is. But still, that's astronomical compared to what it was to make so but it's a hormone. Your body makes insulin. Other non diabetic bodies make insulin. Type two diabetic bodies make insulin. Just can't use it. So if my body doesn't make much insulin or doesn't make any at all, then why am I charged so much money? And I don't have the debate with people whenever they say, Oh, well, why is Narcan free, or why is methadone free, or anything like that. I've been on enough drug overdoses in my lifetime as a first responder

Scott Benner 1:03:36
that should be everywhere. Yeah, yeah.

Kyle Kondoff 1:03:38
Actually, it might have even been in your group. No, it was in a different group. Yesterday I saw a post that said, how low do you have to be before you think that you need to go to the emergency room? I slapped myself in the face right there, just like, oh my gosh, are you kidding me? Eat some fast acting cards and move on with your life. But it's the lack of education through all of that that I've seen and so that goes into the rescuing part of it as well. It's just trying to help out the diabetics of today in whatever we way we can. Right now, it's through the supplies and everything, and it's going to be that way for a very long time. My wife even asked me, she said, because she takes the picture whenever I'm at work, she takes a picture of it at our front door, and then I put the number on it, and we move on, put it on social media, move on. She said, When do I have to stop counting? And I said, Honestly, never. Because I want to see how many packages we can get. Because I already put up a post for the Tennessee floods. I don't know if we got anything from the Tennessee floods, but we didn't get any requests for any supplies. And again, social media unfortunately stopped that as well. We have to go specifically to those pages to find out if anybody is in

Scott Benner 1:04:46
need. Yeah, it's going to and it's gonna keep there. I mean, in the end, it's about liability, and Facebook doesn't want to be liable, or whatever platform you're on doesn't want to be liable. If you solicit for something, someone gives you something, you give it to somebody else, and. To get hurt, they're going to say Facebook allowed it. So that's that's why they have that rule. And then they pressure me and other people who have larger groups. They're like, look you, if this happens like, you should see the reporting that happens behind the scenes about like, is your is your group healthy? Is it like you should see the way they talk about it? Yeah, for sure, they find a way to pressure you.

Kyle Kondoff 1:05:22
I'll get off of Facebook and just say, not only that, but the national nonprofits, that's where we've come into a problem as well, because so many people sat on the groups or tried to contact there was somebody else that was collecting supplies here locally, and they were trying to contact the Red Cross. Well, I've got somebody that used to work for the Red Cross, and they told me they're like, told me they're like, We don't take any of that stuff. We can't do any of that Salvation Army, same thing. They won't mess with any of that stuff. Will they connect me with somebody under, you know, in the underground area, I was able to go there and actually hand out my business card to them, and so they have my contact info, and now united kitchen Navy has that hopefully I get contacted for things in the future. But this is bigger than me again. This is a community. This is everybody that supplied all that stuff. This is the 68 packages that came in, plus all the stuff I collected years before. And I say that actually coming home from the firehouse this week with something that somebody delivered to my old station, and I was able to go up north this time and collect it. And so I have other stuff here, because it wasn't just 68 pack. I also collected at least 15 locally, and I had people bring stuff to my house. So people want to help. But yes, the the politics and everything

Scott Benner 1:06:40
is stopping it. No, a lot of people want to help. And I would say this too, is that I imagine, like, you know, I asked what would happen if they came and knocked her in your door? I would imagine that nobody's going to do that because they wouldn't like publicly what it would make them look like, like public public opinion against something like that would be very significant. Like, yeah, that's

Kyle Kondoff 1:06:57
basically what United Cajun Navy told me, is like, they would be shutting us down. And think about the backlash that they would get. You know,

Scott Benner 1:07:04
it feels like a tiger's tail you wouldn't want to pull if you were there. Yeah, you were the municipality. You know,

Kyle Kondoff 1:07:10
I'll compare this to the big story of this last week, right? It's Cracker Barrel. Think of Cracker Barrel, and say you changed the logo and everything, and now all of a sudden, look at the backlash they got, right? Yeah, the backlash they got. So they said, hey, guess what? We're not changing. Like, because public opinion means something to

Scott Benner 1:07:29
everybody. Yeah, I have to tell you, if you pointed a gun at me and told me to describe the Cracker Barrel logo, I wouldn't have been able to do that. But apparently it's very important to some people. So it's a good point, you know, and that's just my point too. Like I wouldn't think that in the middle of a flood, a local municipality is going to shake you down, because five seconds later, you're going to be standing in front of a news camera saying, Look, I'm just trying to big, redistribute these supplies that people in need, and they're arresting me. And right? Nobody's going to want to look like they're on the other side of that. I would fit right, right, but at the same time, if you screw up and somebody gets hurt, there's going to be no no one will come to defend you,

Kyle Kondoff 1:08:09
absolutely. And I will say, we no longer do right, but we used to give. And I say we I took on that responsibility that was not the nonprofit, because now this is the nonprofit, but I took on that responsibility. I used to give the expired insulin to people. What I did was I was using the 2018 2019 insulin until I got on my pump. Now use limdev, and so all my stuff is current, since it's so new, but I was giving people the newest insulin. And so I still left with the expired insulin. Now we've thrown away everything that's expired, and because of the donations of everybody, we still have a ton of insulin people to do it. It just It honestly sucks to throw stuff away right again. Like I said, we had animus supplies. Why did I keep animus supplies for so long? Nobody's going to come to me and say, Hey, I need animus supplies. But it's still a lot of money, it's still supplies, it's still stuff that you don't want to have thrown away, and diabetes has made me a hoarder no matter what. But this is increased through the nonprofit, through the collection of supplies.

Scott Benner 1:09:12
I'll say this, if Kyle's helped you somehow, or the the organization's helped you somehow, like, send him a note and tell him let so somebody can put on his website to show that he's been helpful to people. Because the, you know, I think that would be be something that other people would be interested in knowing, and it might be a nice way for you to, you know, put a shield around yourself a little bit so you can see that you're not because, you know, like, what if you were just doing this? Like, hey, I'm going to help everybody in a flood. And then you get all the stuff, and then you go sell it to one 800 whatever. It's not crazy to think that the different levels of devious or crazy that I run into every day makes me realize that nothing's out of the question, like something that most people would hear like, Oh my god. Would I ever say that I was helping somebody in a natural disaster? Then take what was sent to me and read. Sell it, I would never do that. I think right, 99 out of 100 people would be like, just flabbergasted at that idea, even. But there's one person out there that's like, Ooh, I got a business that's got to be protected too.

Kyle Kondoff 1:10:11
I'll compare it to two things. I'll compare it to covid masks, because there was the guy that had all those covid masks, and I think the government came and seized them because they were short or whatever was happening. But he was buying them up either ahead of time or literally, whenever they were first coming out with covid. And he had tons of covid masks as well as hand sanitizer. And I can't remember how much they said, everything was valued, but he was trying to sell stuff, and then let's price gouge diabetic Barbie, right? Because we know that it's a thing, so let's buy this thing, and then we're just going to price gouge the crap out of everything for the 3995 or I mean, take your pick. You know, it was with Furbies so many years ago. So yeah, what I'm saying there is, yes, I absolutely understand that. And same thing you said with the scammers earlier. That's why, whenever I send something to people, and I will say that I was bad about this for a very long time, but now I've gotten better. Is sending them the tracking number. You have to send the tracking number. I had so many people again, 68 packages. I had people that were like, Hey, did my package get there? I'll admit. I'll raise my hand right now. I know you can't see it, but I'll admit I was horrible about it. My wife was like, You need to track this. You need to let people know that their stuff came I didn't do that because I was so busy with everything, and I was trying to get out there so many times as well as do all my other jobs. And so now, whenever something happens, I need to track it from that person to us, and then I need to track it from us to the person in need, if we're shipping it somewhere right now, because we're so small and because eventually, hopefully the nonprofit can cover it, but most of this is coming out of my wife in my pocket right now, for the shipping is we do ask for the shipping costs to be covered, but there's people who are like, I can't do anything for shipping, but I can send you these supplies. Whenever you come back with this stuff. I was like, Hey. I mean, whatever works works, you know. And if you can't pay for it, then I don't want to say that we'll cover it, but shoot, we'll cover it. The other thing is, I'll, I'll drive up to Tennessee, if I have a truckload of stuff, you know, and actually deliver supplies to some place. But I can tell you through these floods, it is so, so so hard to try to actually go get these supplies to people, as much as you want to help people. The reality is, and I hate to say it this way, the reality is the type one diabetics were either swept away in the flood or because this was the fourth of July flood, they're away somewhere else, and you can't even get access to those people, because the locals weren't hit as bad. They were hit, I don't want to take that away from them, but they weren't hit. Diabetic wise, we were able to give a whole bunch of stuff to the free clinic there in Kerrville. And so they were appreciative of

Speaker 1 1:12:52
all that well, for so many different reasons. This is a difficult thing to accomplish, and anybody who's out there like actively, honestly trying to help people. You have my respect. I think it's awesome. I want to, I want to tell you that I wish you a ton of luck helping people. I know it's hard, and I want to also wish you luck with getting pregnant with you and your wife, and I thank you very much for coming and doing all this. Because, I mean, again, this is a great episode for people to hear, and hopefully it'll spread the word about what you're doing, and it won't end up with a DEA agent at your front door. It's just, it's nicely to come on and tell this whole story. Is a lot of honesty in what you talked about here today. But you know, between the inability to, you know, to get pregnant, and all the stigma that goes with that, and still being willing to speak about it, and then this next thing, which I mean by your own admission, like could cause you a problem. You're like, Hey, let me go tell more people what I'm doing, because I know it's helping people. I think that's very brave. I appreciate

Kyle Kondoff 1:13:50
it, yeah, and I probably should have put this disclaimer ahead of time, but this is all by words, nothing for any agency that I work with, or anything like that. So yes, also, let me say

Scott Benner 1:13:58
that nothing you hear on the Juicebox podcast should be considered advice, medical or otherwise. Always consult. Otherwise, always consult a physician before making any changes to your healthcare plan. Listen, it's a reality of life. I think anybody would, anybody reasonable understands that, but at the same time, like it's not nearly the first thing in my life that I say there's a huge need here, and there's nothing set up to help people? Yeah? And no one's coming, right? Yeah? That's the other thing. Like, if you're waiting for the system to step up and do something, here you are out of your mind. It's always going to be somebody on the ground who's a little fed up and a little motivated. That's how most of this stuff's usually going to go on. Yeah? Anyway, Kyle, I thank you a ton. I've got to cut you off here, because I'm out of time. But if you want to give your website again, please do,

Kyle Kondoff 1:14:44
yeah, it's T, 1d fire.org,

so just T, 1d,

f, i, r, e, dot O, R, G,

Scott Benner 1:14:53
okay. Thank you so much. Hold on one second for me. Okay. Okay. You.

Having an easy to use and accurate blood glucose meter is just one click away. Contour next.com/juicebox That's right. Today's episode is sponsored by the contour next gen blood glucose meter. Thanks for tuning in today, and thanks to Medtronic diabetes for sponsoring this episode. We've been talking about medtronics, mini med 780 G system today, an automated insulin delivery system that helps make diabetes management easier day and night, whether it's their meal detection technology or the Medtronic extended infusion set, it all comes together to simplify life with diabetes. Go find out more at my link, Medtronic diabetes.com/juicebox,

hey, thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox podcast if you're looking for community around type one diabetes, check out the Juicebox podcast. Private Facebook group Juicebox podcast, type one diabetes, but everybody is welcome. Type one, type two, gestational loved ones. It doesn't matter to me, if you're impacted by diabetes and you're looking for support, comfort or community. Check out Juicebox podcast, type one diabetes on Facebook. I created the diabetes variables series because I know that in type one diabetes management, the little things aren't that little, and they really add up. In this series, we'll break down everyday factors like stress, sleep, exercise and those other variables that impact your day more than you might think. Jenny Smith and I are going to get straight to the point with practical advice that you can trust. So check out the diabetes variable series in your podcast player or at Juicebox podcast.com the episode you just heard was professionally edited by wrong way recording, wrong way, recording.com.

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