This past summer at second Roche/Diabetes Social Media Summit, I had the opportunity to see Jeff in his element, running The Children With Diabetes Friends For Life Conference in Orlando, Florida and I learned that not only was he was a smart guy, but he also had a big heart.
Jeff was more than busy overseeing CWD, but he took it all in stride, and never hesitated to stop what he was doing to talk with CWD families. I watched him as he had conversations with CWDs of all shapes in sizes and I was amazed that he seemed to know all the kids by name - and I'm talking hundreds of children!
He asked them about life and school and what was new in their worlds & called them by name as he passed them in the hall. And I have to say, that’s what really impressed me about him.
Last month I interviewed Jeff via email about CWD, and I hope you like it!
FULL DISCLOSURE: I drank the CWD Kool-aid this past summer and became a convert. Seriously, I can’t wait to go back to Diabetes Land!
CWD founder & President, Jeff Hitchcock at the 2009 CWD Friends for Life UK conference.
What are the three main reasons that you started CWD way back when, in 1995?
I’m not sure there were three reasons. I had been interested in starting a diabetes support web site since I first got access to the web in the fall of 1994. I found myself laid off in June 1995 and that seemed a good day to launch CWD, which is exactly what I did. Initially, the site had a page about my daughter Marissa and a couple of other pages, but I don’t recall exactly what. I hoped that Marissa would meet other kids through her page, and that my wife Brenda and I could share our experiences with other parents.
Did you ever think that CWD would become what it has?
No, I certainly had no idea that CWD would grow to become what it is today. I really had no plan other than to create a web site and learn about the web.
I know that CWD was purchased by Johnson & Johnson in 2008. How has becoming part of J & J changed CWD? What would you like to tell people who might worry about Pharma’s influence on CWD?
The key reason to accept J&J’s acquisition offer was to enable CWD to grow, both online and at our conferences. We had plans to expand our staff, rebuild our web infrastructure to take advantage of the new and evolving social networking tools, and reach families living in Canada and the UK through new conferences there. We succeeded in bringing the Friends for Life experience to Canada and the UK. We’re still working on the web part.
To answer your second question, the many companies involved in type 1 diabetes make it possible for CWD to exist. This has always been the case. Without online advertising and conference sponsorships, Children with Diabetes would not be here. As for influence, I have always let the science guide me. For example, CWD is a big proponent of insulin pumps. Why? Because the science shows clear metabolic and psychosocial benefits.
Some might say, “But you’re part of an organization that sells insulin pumps. Of course you support pumps!” But they would be wrong. We support pumps because of the science. The same goes for insulin analogs, frequent glucose monitoring, and continuous sensors. We let the science guide us. And while we promote therapies, we are agnostic about brands – for example, we support pump therapy, but not a particular pump brand.
You’re responsible for creating an event/org that’s given thousands of children & their families the opportunity to experience what life is like in “Diabetes Land.” And from what I’ve read & seen first-hand, sometimes it’s the first time many of the families in attendance have ever met others who live with diabetes 24 X7. I’ve been told that life long bonds and friendships are formed at CWD. What’s it been like to watch these families and their children come together with others year after year?
The friendships that have come from our conferences, especially our annual Friends for Life conferences, have been truly amazing. I think what surprised me the most was seeing kids with type 1 who had never met becoming such intense friends almost immediately. These kids (as well as adults) share something – life with type 1 – that transcends distance and age in a way that I never fully appreciated.
Many CWD kids and adults are closer to their CWD buddies than they are with their best friends at home. It was completely unexpected, and is completely wonderful.
What’s it like to watch a new family experience CWD for the first time? Is there a metamorphosis of sorts?
There are two ways to experience CWD: online and a conference. Most people experience CWD first online. Typically, their child has just been diagnosed. They’ve learned about insulin, injections, and glucose monitoring but are still in shock.
They find in CWD the comforting voices of moms and dads who’ve been there and can help guide them in their journey from the shock of diagnosis to the confidence required to care for a child with diabetes.
We see a similar evolution at our conferences. On their first day, families new to Friends for Life, for example, can feel overwhelmed at the sheer size of the event. By the end of the conference, these new families have changed – they’re easily navigating sessions and the exhibit hall and the social events. Many families return the next year, and by the third year, these families have the confidence to become volunteers at the conference, helping new families. It’s an amazing experience.
I worry that some CWDs aren’t actively participating in their disease because of their parents’ fears. As a former CWD, who grew up with two type 1 siblings and who lost a sister to type 1 at an early age, I understand parental fears because I saw how diabetes affected my parents first hand. But I'm concerned that if children aren’t given the opportunity to actively work with & participate with their parents as a team re: their diabetes, growing up and transitioning into independent adults living successful lives with type 1 will be extremely difficult.
Owning your diabetes is hard enough, but when you've never been allowed to actually take part in your diabetes - it can become a huge obstacle!
What are your thoughts?
And as a parent of a former CWD who is now living as an adult type 1, what advice would you feel comfortable sharing with other parents on that subject?
As a parent, our primary goal for our children is to shepherd them safely into adulthood. For us parents of kids with type 1, we have an additional responsibility – to help our children to become healthy adults living with type 1. As such, we have an obligation to involve our kids in their care to the extent possible. The level of involvement varies by age (chronological and emotional), but in the end, it’s our kids who have diabetes, not us parents, and their success as an adult with type 1 hinges in large part on how well we transition responsibility to them as they mature.
So I’m in complete agreement with you. With that said, there is no single way to achieve this goal. Different families will find their own way. At CWD, we work very hard with each all of our kids, from pre-school to college, to teach them best practices and to provide an environment in which they can find great education and emotional support to help them on their journey.
Does CWD offer scholarships for families to attend, and if so how would a family go about applying for a CWD scholarship?
The Diabetes Scholars Foundation (www.diabetesscholars.org) provides scholarships for families and adults with type 1 to attend CWD conferences. They also fund college scholarships for young people with type 1 diabetes.
Jeff, I know that in 2010, there’s been a lot of discussion about bringing more adults with type 1 into the Children With Diabetes Friends For Life 2011 Florida Conference, and I’m all for that! I think I know that answer, but I'm going to ask anyway! What’s your reasoning behind opening up CWDFFL to adults with type 1 and what can adults with type 1 expect from CWDFFL in 2011, both at your national & international conferences?
When I started CWD, my daughter Marissa was eight years old. She is now 23, living in Florida and working as a nurse. From a very personal perspective, I’m interested in making a difference for adults with type 1, since my “child” with diabetes is now an adult. Also, and equally important, as Friends for Life has grown, more and more adults with type 1 have come. We have to ensure that the programming at Friends for Life meets the needs of everyone who attends, and that includes adults with type 1.
Besides the fact that CWD is adding more adult type 1 related activities, what else will 2011 hold for CWDFFL ?
In addition to the new programming for adults with type 1, new for 2011 will be a teen driving clinic, which will offer CWD teen drivers advanced accident avoidance training to help reduce their risk of crashing. Teens already have a higher risk of accidents than older drivers, and people with type 1 diabetes who have tight control (A1c under 6.9) also have a higher risk for accidents. The teen driving clinic has been shown to reduce accident rates among its graduates by over 70%, which will help our CWD teens learn to drive better and safer – and to understand why it’s so important to check their blood sugar every time they get behind the wheel.
Anything else that you consider “diabetesalcious” that you’d like to share with us?
Very simply, I consider myself very fortunate to have met so many wonderful people in the world of diabetes. It’s a club we’d all rather not have joined, but once in, it’s nice to have discovered that the members can be quite amazing.
Jeff, thanks for taking the time to answer my questions!