Friends For Life: Talking to Children With Diabetes Founder Jeff Hitchcock

This year’s Children With Diabetes Friends For Life conference was the organization’s 12th annual get-together in Orlando, Florida.  It drew hundreds of families, adults and children with diabetes, doctors, experts, and even celebrities with diabetes like singer Crystal Bowersox.

I’ve read many blog posts about how wonderful the conference was, and I’m not surprised. But I am jealous.  I was diagnosed with type 1 diabetes in 1995 at the age of nine.  Growing up, I did my best to ignore diabetes and resisted all attempts by my parents and doctors to introduce me to other people with diabetes.  So I have never been to FFL, and do not know first-hand about the “magical feeling of belonging” that prevails at the conference.

Now, older and wiser, I would love to go, especially since Children With Diabetes has made a strong effort to recognize and serve all the Now-Adults With Diabetes. Next year, I hope I can attend in person.  Until then, I will have to settle for living vicariously through the behind-the-scenes stories that Jeff Hitchcock, founder of Children With Diabetes and Parent-of-a-Diabetic Extraordinaire, was so kind to share with us in this interview.

When and why did you start Children With Diabetes? How long before you were putting together conferences?
I started CWD in June 1995 to help my daughter Marissa meet other kids with type 1 diabetes and to share the experiences my wife Brenda and I had in raising a child with type 1 diabetes. Back then, there were very few web sites related to diabetes, and CWD was the first to focus on parents and kids.

In late 1999, Laura Billetdeaux, a mom who used CWD’s parents support mailing list, sent a note to that list asking who would like to join her for a vacation in Orlando in June 2000. In very short order, lots of people said they would come, and in June of 2000, 110 families – 550 people – met in Orlando for the very first CWD event. Laura took charge of asking families what they wanted for our next event, and that became the basis for our Friends for Life conferences. Today, Laura is CWD’s Vice President for Education and Programming and runs all CWD events.

What’s the goal of the CWD Friends For Life conference?
Our goal for Friends for Life is to offer families who attend a chance to meet others like themselves, to share their experiences and learn what works, to learn about diabetes care strategies and the latest research from the best clinicians and researchers, and to have an amazing time.
Families attending CWD’s FFL come for many reasons. This year we ran a survey after Friends for Life, and when asked about why they came, families responded:

• See friends – 34%
• Learn about new products – 75%
• Attend sessions to learn about diabetes care and research – 90%
• We go every year – 31%

How do you select the activities and the speakers? How structured is the conference? Is there a lot of free time?
I have had the great fortune over the years to attend many scientific conferences about diabetes, where I have met many incredible clinicians and researchers. I invite those that present topics that I think are of interest to families, and who are great speakers, to come to Friends for Life to present.

Friends for Life is pretty structured, which makes sense when you realize that over 3,200 people attend. Sessions run on time, and that includes sessions for all age groups. Meals and snacks do too. There is free time at the end of the day and in the evenings, and that’s when people find time to connect or reconnect with their CWD family.

What were some of your favorite sessions or activities this year?
It’s hard to pick one session over another, since we select all the sessions with great care and consideration. I did, however, thoroughly enjoy the opening keynote on Thursday on the importance of humor presented by Richard Rubin and Oliver Double. Dr. Rubin has
presented for years and helps put much of the challenges of living with type 1 into perspective. Oliver was new to Friends for Life Orlando, after having done a phenomenal job at our 2010 Friends for Life UK conference. Oliver’s Think like a Pancreas song pretty much summed up our lives.
Also new this year was a Teen Driving Program, which taught new drivers on-the-road skills that can help reduce the risk of automobile accidents. This is important in light of recent studies that show people with type 1 have a higher risk of car crashes than people without type 1.

From what you observed, what were some of the favorite sessions of the kids this year?
“Kids” covers everyone from infants to teens, and the range of sessions reflects that wide age range. Younger kids always enjoy Jackson, the dog with diabetes, who loves kids and happily sits still for blood sugar checks. Tweens and teens spend time with our special guests – and this year that included Kendall Simmons, a former NFL player who spent 11 years as an offensive lineman for the Pittsburgh Steelers, including earning two Super Bowl rings while playing with type 1 diabetes. Teens also have sessions we call “Girl Talk” and “Boy Talk,” which gives them a chance to share and discuss many of the challenges of growing up with type 1 diabetes in a very supportive group. But I think the most important “session” for kids is not a session at all – it’s simply the chance to be together with their special FFL friends.

Who is the target audience of the conference? 
Friends for Life is for families living with type 1 diabetes – and that includes moms, dads, kids with type 1 diabetes and their siblings, adults with type 1 and their families, grandparents, and friends.

Speaking for myself, I was a stubborn and resistant teenager, irrespective of diabetes. How do you engage teenagers at the conference? What difficulties do you see in addressing teenagers?
CWD’s teen faculty, led by Natalie Bellini, Jim Vail, and Marissa Hitchcock – all of whom have type 1 diabetes — have created an incredibly dynamic and supportive environment for teens, both with and without diabetes. This year, over 300 teens participated in sessions on Thursday and the “day at the park” on Friday, followed by Friday evening’s Teen Dinner Dance. Much of the teen program focuses on keeping teens engaged in their care, knowing full well the challenge of caring for type 1 diabetes during adolescence. We want teens to know the science of type 1 so they can make good choices, as well as to make friends who can help them throughout the year. Judging by the river of tears on the final day, it’s safe to say that the teens have the same incredible experience as everyone.

We know pulling off such a big conference isn’t easy. What’s it like behind the scenes? Preparation? Do you have medical staff on duty? Do you have special meals?
CWD’s Laura Billetdeaux and Mike Schurig work throughout the year to ensure that Friends for Life is a success. Helping them are key CWD conference staff members who oversee registration, the exhibit hall, our computer and audio-visual needs, every youth age group from teens to childcare, as well as an army of volunteers who help the staff members. This incredible team takes care of everything that makes Friends for Life a magical experience.
Every youth group has at least one full time nurse as part of their team. Most groups have several. We want families to know that their kids are in good hands, and that we understand type 1 diabetes.

Meals at Friends for Life are often part of the magic – everything is carb counted and labeled, thanks to CWD’s Mike Schurig. Plus, we have a separate gluten free area for those who have celiac disease.

What made you decide to widen the circle this year and include adults with type 1 diabetes? We know from blog posts that the adults had a wonderful time. Was it successful from your point of view?

Quite simply, Marissa and Sam, my daughter and Laura’s son, are now adults with diabetes, as are many of the kids who joined us at the first CWD conference in June 2000. It’s important for Friends for Life to remain relevant to them. Also, through the growth in the online diabetes community, including blogs and other social networking sites, Laura and I have had the chance to meet a lot of grown-ups with type 1 diabetes, and we both want to be sure that Friends for Life is there for them too. So this year we added sessions specifically for adults with type 1 diabetes, and we expect to continue to do so in the years ahead. Based on the many blog posts from those who attended, I would say that it was very successful.

Who funds the conference? Are there scholarships for children whose families can’t afford it?
Friends for Life, like all CWD conferences, is made possible through the generous support of many corporate sponsors. (The entire list is on our web site.) We could not hold Friends for Life without them.
Scholarships are available through the Diabetes Scholars Foundation.

What do you hope people take away from the conference?
While never wanting to understate the challenge of living with type 1 diabetes, I hope that families who come to Friends for Life leave with a sense that life with type 1 diabetes is so much better today than it was even just a few years ago, that they have friends they never realized they had who are always there for them, and that our kids – and grown-ups – can and do live wonderful lives.

What do you take away from the conference?
Happiness.

What can we expect for next year’s conference? How early do you start planning the sessions?
We begin planning the next conference almost while the current conference is underway. For 2012, families can expect another great Friends for Life conference, though the sessions will be organized a bit differently because July 4th is on a Wednesday, the day we normally start the conference. For 2012, the exhibit hall hours will be different and will extend into the weekend.

If you could wave your magic wand and have anyone or anything come to next year’s conference, what sort of session would you design?
We’re working on some great things for 2012, but it’s too early to share.

*All photos courtesy of  Children With Diabetes

Karmel Allison

Karmel was born in Southern California, diagnosed with Type 1 Diabetes at the age of nine, and educated at UC Berkeley. Karmel now lives in San Diego with her husband, where she is loving the sunshine, working in computational biology at the University of California, San Diego, and learning to use the active voice when talking about her diabetes.

Karmel Allison

Karmel was born in Southern California, diagnosed with Type 1 Diabetes at the age of nine, and educated at UC Berkeley. Karmel now lives in San Diego with her husband, where she is loving the sunshine, working in computational biology at the University of California, San Diego, and learning to use the active voice when talking about her diabetes.