164 Delegates, One Voice

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The JDRF 2017 Children’s Congress Delegation was tasked with an important job: asking their Members of Congress to renew the Special Diabetes Program (SDP), which is currently set to expire on September 30, 2017. Led by Chair Angie Platt and her family, 164 Delegates from six countries and all 50 states convened in Washington, D.C., for a three-day whirlwind of inspiration, camaraderie and advocacy culminating with the Delegates meeting with their Members of Congress and their staff on Capitol Hill. What makes this group remarkable? Their personal stories about living with type 1 diabetes (T1D), as well as their interest and efforts to advance T1D research, which led them to being selected out of nearly 1,300 applicants ranging in age from four to 17 years old.

On July 26, JDRF 2017 Children’s Congress Delegates had a full day of activity on Capitol Hill, starting with a hearing before the United States Senate Special Committee on Aging. In front of Committee Chairman Susan Collins (R-ME), Ranking Member Bob Casey (D-PA) and th\e committee, the witnesses – Delegates Charlie Albair of Maine and Lorynn Watt of Pennsylvania, the actor Paul Sparks, and Children’s Congress Chair Angie Platt, who was accompanied by her son, Delegate Jonathan Platt – shared their personal stories about life with T1D, how their lives have improved thanks to research and the need for Congress to continue the momentum by renewing the Special Diabetes Program.

“We need you and your Senate colleagues to renew the SDP for another three years so researchers can continue their great work, said Angie Platt. “This disease doesn’t stop, so neither can we.”

The Top Priority: A Three Year Renewal of the Special Diabetes Program

After the hearing, the Delegates engaged in a total of 230 meetings with the Members and/or staff from their House and Senate offices. Delegates came prepared with their stories and their scrapbooks, thoughtful pieces that fully illustrate their lives with T1D. In addition to sharing their stories, their main ask of their Members of Congress was for a three-year renewal of the Special Diabetes Program (SDP) at the current funding level of $150 million annually. The Delegates also stressed the importance of ensuring JDRF’s key principles for healthcare reform are met, and highlighted the need for robust annual funding for the National Institutes of Health and the U.S. Food and Drug Administration.

The SDP has bipartisan support in Washington, D.C., and Delegates met with leaders from both sides of the aisle, from the Senate Majority and Minority Leaders to freshman Members in the House, to reinforce the need for a multi-year renewal of the program. The SDP has funded groundbreaking T1D research that has led directly to new insights and advances, like continuous glucose monitors and artificial pancreas systems, which have improved the lives of people living with diabetes. “Significant progress has been made that is putting us closer to the goal of treating, preventing and ultimately curing this disease,” testified Griffin P. Rodgers, M.D., Director of the National Institute of Diabetes and Digestive and Kidney Diseases at the National Institutes of Health. “These advances are the fruits of long-term sustained investment in the SDP and a preview of what we hope will come as a result of those efforts.”

Since the SDP expires on September 30, 2017, we encourage you to contact your Members of Congress today to advocate for its renewal.

Delegates and T1D Role Models

In addition to an exciting day advocating on Capitol Hill, the 164 Delegates had the chance to get to know each other, learn how their peers manage their T1D, and discover that, although they may live thousands of miles apart, life with T1D is similar no matter where they live.

The Delegates were joined by an accomplished group of people living and thriving with T1D. These role models appeared in a town hall, hosted by actor Austin Basis, where they spoke about their experiences of living with T1D and fielded questions from the intrepid Delegates. Some highlights included role models candidly sharing how they balance managing T1D and their exciting careers, the importance of the T1D community and the power of advocacy.

Join Us in the Fight

JDRF 2017 Children’s Congress is over, but our work is not. JDRF needs your help continuing the progress our Delegates made in Washington, D.C. Sign up to become an advocate today, respond to alerts and ask your friends to do the same.

JDRF 2017 Children’s Congress was supported in part by:

Premier Sponsors – Lilly Diabetes, Novo Nordisk

Social Hour Sponsor – Merck

Supporting Sponsors – Genentech, PhRMA

Elite Partners – Ford, Lilly Diabetes, Marshalls, Novo Nordisk

 

By Brian Herrick