JDRF 2023 Children’s Congress Makes Waves in Washington

JDRF 2023 Children’s Congress is over—and it was an incredible success! It’s been a long four years since the last JDRF Children’s Congress, and the Delegates did an incredible job of making up for lost time. Delegates forged new connections, told hundreds of stories, and, as a result, we made real progress towards achieving key aspects of our Advocacy agenda.

One JDRF Children’s Congress, One Voice

Every two years, more than 160 children with type 1 diabetes (T1D) between the ages of 4 – 17 gather in Washington, D.C., to meet face-to-face with some of the top decision-makers in the U.S. Government. The selected Delegates represented nearly every state, as well as four International Affiliates. Delegates have a unique and empowering opportunity to help Members of Congress understand what life with T1D is like, while forming lasting bonds with fellow youth who live with this autoimmune disease.

The event was led by JDRF 2023 Children’s Congress Chair Natalie Stanback and her family.

The Delegates focused on two areas of JDRF’s Advocacy Agenda: Renewing the Special Diabetes Program (SDP) and the insulin affordability crisis.

The SDP currently provides $150 million annually to T1D research through the National Institutes of Health (NIH), the country’s premier medical research agency. Additionally, it complements JDRF’s research efforts, allowing JDRF and the NIH to collaborate to advance T1D research as quickly as possible. The SDP  is set to expire in September and renewing it is JDRF’s biggest priority—and the #1 job for the Delegates.

Right now, there is legislation to renew the SDP for two years at $170 million annually. This would be the first annual increase in funding in 20 years.

“The SDP is vital,” said Natalie Stanback. “By spreading awareness in the halls of Congress and meeting with our lawmakers, we did all we could to ensure the research made possible by this program continues. We made sure the needs of the T1D community were heard!”

Congress also must build on recent progress made, and further address the high cost of insulin in America. More must be done to ensure all those who need it have access to affordable insulin.

Over the course of three days, Delegates traveled to Washington D.C., spent time with each other, and received training on how to advocate for these issues with their Members of Congress.

Celebrity T1D Role Models Join the Fight in Washington

Ten T1D champions also supported the event, inspiring the Delegates and joining our fight for the T1D community. These celebrity Role Models, who all either have T1D or a direction connection to it, included:  

  • JDRF 2019 Children’s Congress Delegate, Athlete, and American Ninja Warrior Women’s Champion – Katie Bone
  • NFL Super Bowl Champion – Orlando Brown, Jr.
  • Broadcast Journalist – Madison Carter
  • Rendering & Dailies Supervisor, Pixar Animation Studios “Turning Red” – Susan Fong
  • Saxophonist & Music Arranger – Antoine Gibson
  • Producer, Songwriter, Rock & Roll Hall of Famer – Jimmy Jam
  • JDRF Chief Executive Officer – Aaron J Kowalski, Ph.D.
  • International Supermodel – Stephanie “Bambi” Northwood-Blyth
  • Senior NFL Insider at ESPN, Sports Broadcast Journalist – Adam Schefter 
  • Actor & Producer – Derek Theler

In addition to lending their voices to the cause on Capitol Hill, the T1D Role Models participated in a town hall. At this event, the Delegates had the opportunity to ask questions and interact with the T1D Role Models. The questions varied, from “How does T1D impact working on a movie set?” to “What is it like to win American Ninja Warrior with T1D?” The T1D Role Models answered every question with honesty and specificity—showing that anything is possible for people affected by this disease.

Delegates Take on Capitol Hill

On July 11th, the Delegates officially headed to Capitol Hill.

The first event was a Senate Appropriations Committee hearing led by U.S. Senators Patty Murray (D-WA) and Susan Collins (R-ME), Chair and Vice Chair of the Senate Appropriations Committee, as well as Senator Jeanne Shaheen (D-NH), a senior member of the Appropriations Committee, the hearing was titled “Accelerating Breakthroughs: How the Special Diabetes Program Is Creating Hope for those Living with Type 1 Diabetes.”

Five witnesses spoke about the importance of these issues and what it’s like to live with T1D.

During the hearing, these witnesses testified before a standing room-only chamber full of our Delegates and their families. Delegates Elise Cataldo (NH) and Maria Muayad (ME) testified bout what it’s like to live with T1D, including the literal highs and lows, and the importance of the SDP and insulin affordability. Griffin Rodgers, MD, Director, National Institute of Diabetes and Digestive and Kidney Diseases, provided his perspective on the SDP, what it has accomplished, and what it can do with more, sustained funding. James “Jimmy Jam” Harris, award-winning Music Producer and Philanthropist, told his story of life as a T1D dad and his dreams for a world without T1D. JDRF CEO Aaron Kowalski, Ph.D. also testified, sharing his unique perspective as a scientist and person with T1D.

Attendance was fantastic; 15 Senators came to the hearing and asked questions. This hearing was a unique and positive one—featuring a lot of applause and consensus amongst all the Senators.

“I got a sense that there was true bipartisanship in that room,” said Jimmy Jam after the hearing. 

At the conclusion of the hearing, the Delegates traveled across Capitol Hill to meet with their Senators and Representatives to reiterate our calls to action: renew the SDP and enact legislation to make insulin more affordable.

Additionally, several Delegates who participated in T1D clinical trials traveled to the Food and Drug Administration (FDA) to meet with FDA Commissioner Robert M. Califf, M.D., and FDA staff to share their experiences in clinical trials and discuss the importance of developing and approving new therapies for the T1D community.

It’s A Wrap

In total, 163 Delegates, plus our T1D Role Models, conducted 239 meetings with U.S. Senators and Representatives to gain support for these critical issues. They did an incredible job—and were ideal representatives of the T1D Community. These Delegates were tasked with telling their stories about life with T1D, and each of them rose to the occasion—and more.

Get Engaged!

You can experience the highlights of JDRF 2023 Children’s Congress on our social media channels, including interviews with Delegates and celebrities, recaps from JDRF CEO Aaron Kowalski, and more. Check them out on InstagramTwitterFacebookYouTube and LinkedIn.

You can also experience navigating Capitol Hill virtually in JDRF One World!  The game, created by JDRF as part of the JDRF Game2Give program, is a virtual world built inside the popular online game Roblox that allows for education, celebration, and of course—play! It’s a place where people in the JDRF community—kids and adults—can get together, play games, learn about T1D, and meet new friends. In the most recent update, players can take on the role of a JDRF 2023 Children’s Congress Delegate and visit Capitol Hill, run obstacle courses, and so much more. Learn more and play at jdrf.org/oneworld.

Join Us!

While the Delegates did an amazing job advocating to our legislators to renew the SDP and do more to fix the insulin affordability crisis, you can join the fight too. Sign up to be an advocate! It’s the easiest way to stay up-to-date and take action on advocacy issues. 

This event was made possible by:

Delegate Social Sponsors Dexcom, Vertex, and Xeris Pharmaceuticals 
Supporting Sponsors Insulet and Lilly
Diamond One Society Partnership Sponsors Ford and Marshalls