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Inspiration Exchange Diabetes Moments Episode 7: Friends for Life with Jeff Hitchcock, Children with Diabetes

Jeff Hitchcock’s (CWD founder and Co-founder of FFL) daughter, Marissa was diagnosed with type 1 diabetes in 1989. With no family history, Jeff and his wife committed not to let diabetes interfere with anything Marissa might want to do with her life. Her diagnosis inspired Jeff to create Children with Diabetes®.

Show Notes

  • Marissa's diagnosis story
  • DCCT
  • Children with Diabetes Community (CWD)
  • Friends for Life® Conference (FFL)

Intro/Outro Music

Road Trip by Joakim Karud. Music promoted by Audio Library.

Jeff Hitchcock, founder of Children with Diabetes

Show Transcript

Intro: Hello and welcome to Inspiration Exchange: Diabetes Moments podcast a collection of inspirational stories brought to you by Roche Diabetes Care. I am your host, Cherise Shockley, and during this podcast we will focus on stories of inspiration and peer support while on the go. So grab a cup of coffee and enjoy the show.

Cherise: Hi everyone. Thank you for listening to the Inspiration Exchange: Diabetes Moments podcast. I am your host, Cherise Shockley. I was diagnosed with Latent Autoimmune Diabetes in Adults in 2004. Joining me today is Jeff Hitchcock, founder of Children with Diabetes Online Community and co-founder of Friends for Life. Thank you Jeff for joining me.

Jeff: Hi Cherise! Happy to be here.

Cherise: Well thank you so much. There are so many things that I want to ask you and I just want you to know before we get started that I am a very big fan of everything that you do. Um, and I'm always cheering for you all in any endeavors that you all, um, that you all take part in because you, what you do for the diabetes community, not just for children and parents but for the overall community. It's inspiring. So thank you so much.

Jeff: You're very welcome.

Cherise: Thank you. So before we get started, what is your connection to diabetes?

Jeff: So my oldest daughter, Marissa, was diagnosed with type 1 diabetes shortly after her second birthday. That was in September of 1989 almost 30 years ago. And that's our connection.

Cherise: She was two? I hear a lot of people, it's a matter of fact, they had a conversation with someone the other day. They were like, what's the cutoff for, for juvenile diabetes? And I was like, well, it doesn't happen quite that way. So I think that, um, when I hear two years old or 23 months old, it's like, wow, I couldn't imagine what life was like, especially back then in 1989.

Jeff: Yes. So we lived in Washington DC at the time and like many Washington summers, it was quite warm. And in the lead up to her diagnosis, she was drinking in enormous amount of water and soaking multiple diapers a night. And it was clear something wasn't right and interestingly, I remembered an old episode of Mash in which Hawkeye is at a bar talking with a helicopter pilot who was explaining the exact symptoms that Marissa was experiencing and we took to the pediatrician and rather than do a finger stick blood glucose test, the pediatrician wanted a urine sample and two year old’s do not urinate on command. So we went home with a sort of a little apparatus to try to capture some urine and it didn't quite work. And by the time we were able to get a sample, the office had closed, and it took a couple of days before we confirmed that she had type 1 diabetes and my wife took her to Children's Hospital in Washington DC, uh, to confirm the diagnosis.

Cherise: Wow. So no family history of type 1 diabetes at all?

Jeff: None that we know of. And I think that's the common experience. Most people who have a child diagnosed with type 1 diabetes do not have a family connection.

Cherise: When you and your wife found out that Marissa had type 1 diabetes, what was your reaction to hearing that she had type 1 diabetes? Did you even know anything else outside of M*A*S*H about type 1 diabetes?

Jeff: So we, we didn't know anything about diabetes. I remembered a classmate from when I was in sixth grade who ate licorice in the classroom, obviously to treat a low. But other than that, I, I had no personal experience and we had a good diagnosis experience, if, if you can call it that. Her pediatric endocrinologist told us, don't worry, everything is going to be okay. And at the time that was still a bit of a bet. The DCCT had not published its data, but this physician was on the forefront and, and he understood that keeping blood sugars as close to target as possible would result in a reduction of complications, which was proven out by the DCCT. And he and his team with a nurse and a psychologist basically told us or shared with us how to help Marissa live a good life. And my wife and I made a commitment that we would not let diabetes interfere with any, anything that Marissa might want to do with her life. And we just simply said about taking care of her.

Cherise: I was diagnosed at 23, my story was similar. My doctor didn't really say, well Cherise you know, there's going to be a cure for this. His focus was on making sure that I have the tools to help me live well with diabetes. Um, so I didn't have horror story. I like most people, but I do have a question for you. You mentioned DCCT. Can you explain what that is for people out there who may not be familiar?

Jeff: Sure. This was a, a landmark study of over a thousand people with type 1 that set out to answer the question, does tight control make a difference in the reduction in the risk of complications? And in the years leading up to that and in the decades leading up to that, it was unclear whether complications were caused by high blood sugars or whether they were simply part of what happened when you got diabetes. And the DCCT definitively proved that keeping blood sugars closer to the target range and reducing hemoglobin a one c resulted in a reduced risk of complications. And it is that study, which as I recall, costs the U.S. More than $250 million. That is the basis for diabetes care today. And that's why we strive to achieve hemoglobin A1C targets that are as low as possible because it is at that low level that the reduction in complication risk as experienced.

Cherise: That totally makes sense. Thank you so much for sharing because that happened like way before I was diagnosed. So you talked about, you know, the DCCT and how that's became the basis of our diabetes treatment and keeping the A1C as low as possible. So that's the treatment of diabetes. Where did you, since Marissa, you know, you didn't know anyone with diabetes, type 1 diabetes. What did you find support for Marissa?

Jeff: That's a great question. So, so back in 1989 the internet that did not exist, certainly not on the form we know today, but as a software engineer, which was what I was doing at the time, we used an online service called Compuserve as sort of a tech support, peer support for other software engineers. And on Compuserve I discovered a diabetes related full yeah. Which was quite interesting. And it was a place where people who use Compuserve for other reasons went and talked about diabetes and related support issues. And in there I was able to ask questions about type 1 diabetes to grownups who had type 1. And I was able to get a little bit of support but not a lot. There were not a lot of people like myself, a parent of a young child with type 1 diabetes using that as a support platform. But I kind of tuck that back in my mind. Uh, and it became sort of the germ of the idea of what became the Children with Diabetes website many years later.

Cherise: Okay. So Compuserve, was it kind of like a AOL, you've got mail type of a system? Was it slow dial up? Cause I'm just curious cause I've never heard of it before.

Jeff: It was definitely slow dial up and it wasn't so much an email. It was more of a forum, a place where there were topics and you would post messages and people would answer. And as I said, we used it mostly for software engineering challenges. So then do you know, how do I solve this particular problem or we have a problem with a compiler kinds of things. And, and then on the diabetes side to it was, it was very different. Um, there was, uh, there was one gentleman in particular who story I share often. He was an engineer at CalTech named Carl J. Lydick and he had type 1 diabetes and today we would call him a troll. He was vicious to people who he thought didn't post appropriate questions or who showed any sign of not understanding. But if you ask the right questions in the right way, he was very knowledgeable and would share his experiences living with type 1 diabetes. And then Carl wasn't there, there were just no posts for months. And we discovered that he had died from complications of type 1 diabetes. And, and I, I use that as an example that we are not the enemy. It is diabetes and it has always been that way.

Cherise: So would you say that, and this is just me just thinking off the top of my head is sometimes even though people are trolls, there's something underlying that's causing them to act that way. And until we possibly either one get to understand that person, that why, because there are a lot of people on Twitter that can be very vicious. But for me, I, I actually take the time to get to know them in ways to say, okay, this person really isn't bad or a troll that, you know, there are some underlying issues whether they feel like, they feel like they are ignored or they've never been heard or it's just always something, which is why I can't write everybody off. Um, and it seems like that was the case for Carl. He had really good intentions, but just didn't come off that way. So it put them into that troll type behavior.

Jeff: Yeah, I, I, I think he, he had an ability to help, if you could ask it in a way that he needed to be asked. And this the only way I can describe it then and you know there's, there's people from all over and, and very different personalities who live with type 1. And I think everyone has a story to share and everyone has a voice that should be heard.

Cherise: I definitely agree. Marissa was diagnosed in 1989 and on CompuServe you found a small community of people with type 1. At what point did you decide and say, you know what, I need to do something. I want, I want to create a space like this for, for parents of children with diabetes.

Jeff: So we, we had, as I mentioned, lived in the Washington DC area and I was recruited by a company in the Cincinnati area and that didn't quite work out. I got laid off a year after relocating, but during that year, the company I was with had gotten access to the worldwide web, this new thing. And I learned how to build webpages. And when I got laid off I, I thought, you know, this was a perfect time to build a website about how our family's experience caring for a child with type 1 diabetes. So I came home and about noon, called my Internet provider and said, I need a fulltime modem connection 2088 and I'm going to launch this website today. And that's exactly what I did. So CWD was born from getting laid off and started on a modem in my home.

Cherise: And that was in, was that in 1989 or 1996.

Jeff: June of 1995.

Cherise: Wow.

Jeff: And I cashed out all of our retirement savings, thinking the internet, it's going to be big. And I will say that was a bit premature. Uh, but it, it proved to be correct and it was an interesting time back then. There were a couple of websites that had diabetes related information. Uh, the largest was a site out of the University of Wisconsin in Madison called the Diabetes Knowledge Base run by a guy named Donald Blaine. And that basically was the repository of everything on the web about diabetes. And a lot of it was type 1, which was quite unusual. And in the fall, I think in August of '95, that website went dark and all of the links, all of the knowledge vanished. It was, it was sort of strange. And there were two other websites at the time, no one run by a gentleman named Bill Quick. He's an adult endocrinologist called Diabetes Monitor. And another run by a gentlemen at the time known as Rick Mendosa, later David Mendosa, uh, and it was links to all kinds of diabetes stuff. And the three of us became fast internet friends and shared links. We found new content, uh, and we're able to share our experiences with our readers, which was quite interesting.

Cherise: So thinking about the Internet back then and what it is today, you've seen it come from the diabetes community, come from three people to blogs to more communities, to Instagram, to Twitter. What has it been like sitting back and watching it kind of kind of evolve into what it is today?

Jeff: It has been an amazing couple of decades when, when we started, when I started, there was essentially nothing for families living with type 1. So Children with Diabetes because I have nothing else to do. Uh, I was able to build out things like chat rooms and forums and let people post their stories and all of the things that we kind of take for granted today, but the tools to do what works strangely primitive there. There was nothing like blogger software to allow someone who had a story but not technical expertise to get online and share. You had to know how to run a web server. You had to know how to replace broken hard drives. You had to know how to build the software. And it just turned out that I knew how to do that. And it made it easy for me, um, to, to do that. Uh, the, the servers were essentially in my home. Um, I had from modem lines to T1 lines to other kinds of networking, basically running into my house. And it's been, it's been fun to see the tools get so simple that anyone with a voice on a story to tell, uh, being able to do that.

Cherise: It's to me, it's sitting here and I'm listening to you. So I've had Scott Johnson on and also Kerri Sparling, but you were way before them. So like I said, to hear your experience when there was nothing and see what it is today from Wordpress to Blogger, Twitter to Instagram. So I just had to kind of see, get a little glimpse back into the future of what it was before, what it is today. So, um, let's talk about Friends For Life and how that came to be.

Jeff: Sure. Um, so as I mentioned, Children with Diabetes was a website and we had various ways to allow families to connect. The focus at that time was true to its name. It was families who had children with type 1 diabetes that was sort of the ultimate truth in advertising. And Laura Billetdeaux to know who lives in Michigan, had a son, Sam diagnosed and when Sam was diagnosed, she took him to the University of Michigan Hospital and their Diabetes Educator gave her a little flyer about Children with Diabetes and said, when you go home, go here, this is a website that will help you. So Laura comes home, gets online, finds us, finds our parents' email support list and starts getting involved. And then in the Fall of 1999, she sent an email to that list, basically saying, my family's going to Orlando in June of 2000, would any of you like to come a share a vacation with us?

And slowly people said, yeah, well I'd like to come. I'd like to come. And then she reached out to me and said, could this be an official CWD event? And, uh, I, I said no, because that's not what I knew how to do. That was obviously not the right answer. And in time, as, as it grew, the number of people who wanted to attend became large enough. It made sense. She convinced me that was the right thing to do. And in June of 2000, 550 people, about 110 families got together in Orlando for two days of mostly fun just letting our kids be real kids. And that was the beginning of what became Friends for Life. We reached out to the families who attended, ask them what they would want for the next year. And it was scientific sessions and an exhibit hall with the companies that built the tools we use to take care of our families, uh, and, and more social events. And Laura and I went down to Disney World to Coronado Springs. We met a guy named Marty Kamrada and we stood in one of the ballrooms Coronado H it's called. And we looked at this, this ballroom, and said how in the world, are we going to fill this room?

And this year at Friends for Life, Orlando, we don't only fill that ballroom, we fill the entire conference center. So we went from not sure how we'd fill a room that holds maybe 500 people to needing even more space than that entire facility can provide us. And it's a real testament to the, um, the value of getting together with others, living with type 1 and learning and sharing.

Cherise: Well, so 500 people and trying to figure out a conference room. no you can fill it, you just need more space because there are more families. Five or six years ago you all added more tracks for adults with type 1.

Jeff: We did. So as I mentioned at the beginning, the conferences were for families who had children with type 1. Well, my child with type 1 will be 32 this year. So that is, she's not a child anymore. She's an adult. And sometime in the sort of the early two thousands, mid two thousands adults with type 1 found us and began to come to the event. And, and certainly by 2012-13, it was a growing number of grownups with type 1 who came with their families. And the sessions that we held began to grow to be related to grownups. Things like how do I be a supportive spouse? How do I be, um, How do I deal with the challenges of living with type 1 as a grownup? Workplace discrimination issues, psychosocial things, things of that nature. And now about half of our programming is related to grownups, uh, and it sort of writ large and that's been a real evolution of the programming. About half the people with type 1 who come to Orlando now are adults with type one. Um, again, that's also what changed.

Cherise: You also have conferences or regional conferences throughout the United States. I, one of the ones that I see all the time on social is the one that takes place in Washington DC.

Jeff: Let me, let me just back up and talk about the, the idea behind the regional conferences of which the one in Washington DC is one example. We realized early on that not every family could pack up their kids buy plane tickets, fly to Orlando, spend a week at a Disney resort. There's some time constraints there and there's certainly some costs associated with that. So we decided we would run smaller regional events with the goal of bringing a small piece of the friends for life experience or the CWD conference experience on a Friday night, Saturday and Sunday for families in a local area. And we've done these all over the country and the one you mentioned in Falls Church outside of Washington DC began with a focus of advocacy as a theme for that conference. And by advocacy we're really talking about how do we as a community influence policy decisions on a national level to improve the lives of people living with type 1 diabetes.

You know, whether that is affordable access to drugs and devices or whether it's ensuring that research funding remains in place or things related to children with type 1 being allowed to participate fully in public school activities or workplace discrimination issue. So all of that, and given the proximity of that conference to our nation’s capital, we have the ability to draw on people from various parts of the federal government that impact diabetes, whether those be people involved in FDA. So that would be approval of new drugs and devices, whether it's people from Congress who vote on policies that impact us from reimbursement to costs and things of that nature. Uh, and to lobbyists who can come and share with us how to be effective when you visit your elected officials and tell your story about living with diabetes. So that, that was the idea behind bringing a conference to Washington DC.

Cherise: What is next for Friends for Life?

Jeff: Well, for friends, for Life Orlando this year, it's the 20th summer event. That's sort of a big milestone leave. We have some great sessions planned and as you know, having been there, we hold a banquet, um, the Thursday evening and we're doing a formal ball so everyone gets to dress up. Uh, and, and Friends for Life will continue to be there for families living with type 1, both parents who have kids and adults who live with type 1 as an organization we are doing things more than just Friends for Life. And those fall into a couple of areas. One of them is advocacy related specific advocacy events. A couple of weeks ago we organized an event on Capitol Hill with the idea of helping the hundred new members of Congress understand better the impact of diabetes on our nation. And by diabetes I mean diabetes writ large, not just type1, not just type 2 but diabetes in general.

And with nine other organizations, we were able to bring representatives from these various new members of Congress, mostly their staffers who you really want to chat with, to a standing room only room chaired by Dr. Kenneth Moritsugu, our board chairman, who is like you an adult diagnosed with LADA and a former acting surgeon general of the United States. And we're able to share the, the impact of diabetes on our nation from a cost perspective, which is enormous from the oversized impact of diabetes on communities of color in the United States and on the importance of advocacy in helping shape how people with diabetes live in the U.S. and we plan to do many more of those types of events, both on the national and state level to make it easier for families with type 1 diabetes to get affordable access to the devices and drugs that they need to care for themselves and to make sure that policies are in place to make sure that people with diabetes do not face discrimination either as children in school or as adults in the workplace.

So that's one part of what, what we have coming down the road. We also work with our sponsoring partners, the organizations that help us deliver things like Friends for Life to help them better understand how to deliver products, both drugs and devices that make it easier for people with type 1 diabetes to care for themselves. And we do that at events throughout the country and actually throughout the world, uh, in conjunction with other major diabetes related conferences that lets our community share their experiences and their suggestions for improving care. And interestingly, our, our sponsors really, really listen and do their best to make enough to innovate in a way that is positively impacting our lives.

Cherise: So I had Amy, I edge on a few shows back and I'm curious to know what your answer would be. What are you most excited about with the future of diabetes technology? It doesn't really have to be technology in itself. It can be insulin, it could be pharmaceutical, whatever you can think of. What are you most excited about?

Jeff: Well without question, the, the advent of automated insulin delivery has the potential to impact how people would type 1 live in ways that could scarcely be imagined five years ago. When you can let a sensor and an insulin pump take care of the dosing decisions, not only can you achieve outcomes that are, you know, more closely aligned with targets both in terms of absolute A1c and reduction and variability and time and range and all of these markers that, that we, we know or, or think reduce the risk of complications and results in people simply feeling better. But you also reduce dramatically the psychological burden of living with type 1 diabetes, As a parent, what I, what I worried about most was the difficulty of, you know, blood sugars overnight knowing that we had to sleep but diabetes, never did. And automated insulin delivery, whether through commercial systems that are coming to market or homemade automated insulin delivery systems that are used by a lot of adults today, the ability to go to bed and no, you will wake up with your blood sugar exactly where you want it to be is so reassuring and gives you the, the start of a day where you, where everything is, where you want it to be.

And that is going to be a breakthrough. And as I said, not just in the metabolic management, which is critically important, but in the psychological aspects of reducing burden, living with type 1. And I think that is, that is the holy grail for control. It's not a cure. I mean by no means is it a cure, but it's going to dramatically improve the lives of, of everyone living with type 1 diabetes and the family members that live with them.

Cherise: Sitting here listening to you say that I'm like, Whoa, that would be so like I'm sitting here and I still waiting for the time where I don't have to make decisions. Um, no, there's some things that we're still going to have to do and I'm actually okay with that. But just the ability to, I mean, just wake up and have a stable blood sugar and not being woken up the middle of night at one, two, three, four o'clock in the morning and bothering my spouse or my daughter to go get me something because I can't go get it myself. So I, I also forward to technology, um, in ways that it will help ease some of that burden for us. It just, not even just physically, but right.

Jeff: And, and the challenge I think we have as a community is how do we ensure that that technology is available to everyone living with type 1 diabetes? And that's a different problem than simply delivering the technology. And I don't know that as a, as a country we've come up with a good solution for the how do we get it in the hands of everyone?

Cherise: I definitely agree with you on that. Um, access and affordability are yes. So without us even going there on this podcast, um, before we go. What inspires you.

Jeff: Um, my daughter and, and all of the, uh, you know, the sons and daughters like her when, when she was diagnosed, you know, the future was, you know, it's trite to say it was unknown, but in the diabetes space we really didn't know what was coming.

Fast forward to today. She has lived with type one for nearly 30 years, is in perfect health, had a baby, works at Stanford University on closed loop, automated insulin delivery systems to help move that ball forward. And she has, uh, achieved everything she's wanted in life. She and her husband who traveled the world, they've been all over the U.S. They, they live a life of, of happiness. And you know, as the, as the parent of a child, that's all you want at your children, grow up and are happy and healthy and have meaningful lives so that, that remains the inspiration.

Cherise: Jeff has been a pleasure to have you on today, and thank you so much, uh, for sharing so much of yourself. Uh, your personal story and your journey of parenting a child with diabetes and also the inception of CWD and Friends for Life. Um, we look forward to, to hearing more about all the great things that you're doing in the community.

Jeff: Thank you, Cherise.

Outro:  Thank you for listening to the Inspiration Exchange: Diabetes Moments. If you have questions or comments, feel free to send me an email or a tweet using hashtag #diabetesmoments

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