A Report on the JDRF Children’s Congress

Back in 1999, an 8-year-old Tommy Solo overheard a group of adult JDRF volunteers talking about going to Washington to talk to Congress about type 1 diabetes. He decided to speak up too: Tommy thought it would be great if children could go along, because their voices also needed to be heard. The idea quickly became a reality: The first JDRF Children’s Congress was held that year, and it’s taken place every two years since.

At this empowering and inspiring event, children with type 1 diabetes from across the country gather to meet face-to-face with some of the top decision-makers in the U.S. government. The JDRF and its volunteer-based committee choose 150 child delegates, ranging from ages 4 to 17, out of a pool of nearly 1,500 applicants to represent all 50 states and the District of Columbia. These kids have a unique opportunity to help members of Congress understand what life with type 1 diabetes is like and why research to find a cure for diabetes and its complications is so critical.

The 2013 event, held July 8-10 and sponsored in part by Lilly Diabetes, was led by JDRF International Chairman Mary Tyler Moore. It included congressional visits by the delegates and a Senate hearing, during which Ms. Moore and select delegates and advocates testified on the need for continued funding for type 1 diabetes research, under the theme of “Promise to Remember Me.”

Nine-year-old Carson was thrilled to be named a 2013 delegate. “Representing my state at the Children’s Congress was so cool. I met so many celebrities who have type 1 diabetes. I got to sing the song ‘Promise to Remember Me’ with Crystal Bowersox from ‘American Idol.’ I also got to meet Gary Hall, Jr., a swimmer with type 1 who has won 10 Olympic medals. One night, he came to the hotel pool to swim and asked if anyone wanted to race him in the pool. Of course, I said yes. He won, but it felt like a once-in-a-lifetime opportunity to swim with an Olympic swimmer! I also got to go to a Senate hearing on Capitol Hill about type 1 diabetes research. This made me realize that even though I am a kid, I can make a big difference. And meeting so many other kids with type 1 diabetes made me feel normal …almost like all the other people in the world had diabetes like me. I was very, very sad when I had to leave everyone and go home, but it was an experience I’ll never forget!”

Past attendees share similar sentiments. Stephany Shaheen and her now 13-year-old daughter Elle served as the chair family for the 2011 Children’s Congress, and Elle was also a delegate for the 2009 Children’s Congress. As chair of the event, Shaheen (daughter of U.S. Senator Jeanne Shaheen) engaged, supported, and energized the delegates and their families during the advocacy efforts on Capitol Hill.

“It was a very profound and inspirational experience to be around so many families gathering from across the country in an empowered way to raise their voices to support diabetes research and advocacy,” Shaheen recalls. “These kids have the power to give voice to what they struggle with every day, and they get to meet people with type 1 who’ve accomplished so much. We got to hear Supreme Court Justice Sonia Sotomayor speak about how it was for her as a child with diabetes and how far we’ve come. She talked about how there weren’t lancet devices back when she was a kid, and how she’d have to use razor blades to prick her fingers instead. It was such an empowering experience for our delegates to see this woman who’s achieved so much professionally despite (or even because of) the challenges she’s faced. I would encourage anyone with a child with type 1 to apply to be a delegate at the next Children’s Congress, because it’s something my daughter and I will never forget.”

To learn more about JDRF Children’s Congress, visit the JDRF website.

 

Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring.