JDRF’s Children’s Congress: Finding A Cure For Type 1 Diabetes
Another successful JDRF Children’s Congress is in the books! On July 9-11, 2023, over 160 kids between the ages of four and 17 who have type 1 diabetes (T1D) went to Washington, D.C. to meet with members of Congress and share the importance of federal funding for research in order to find a cure.
What is JDRF?
JDRF is the leading worldwide organization combining research, advocacy and community engagement to develop life-changing discoveries for people with T1D. It is also the largest nonprofit in the world that funds T1D research. JDRF research focuses on three main areas in the search for a cure: screening, disease-modifying therapies and cell therapies.
Screening aims to create a universal T1D risk screening tool to identify who is at high risk for developing the disease, decrease rates of diabetic ketoacidosis (DKA) upon diagnosis and quicken the development of disease-modifying therapies by speeding up clinical trials.
Disease-modifying therapies involve conducting research to create new therapies that can slow, stop or reverse the development of T1D in order to cure people no matter which stage of diabetes they are at.
Cell therapies include investing in research and clinical trials that develop methods to insert healthy, insulin-producing beta cells into people who have T1D with little to no immunosuppression.
JDRF also offers community through virtual connections, forums, virtual fundraising and the ability to take action by becoming an advocate and raising awareness for T1D.
Children’s Congress
JDRF Children’s Congress started with an idea that nine-year-old Tommy Solo had. He asked his mom why kids with diabetes couldn’t go to Washington and tell representatives about life with diabetes while sharing the importance of finding a cure. His mom and other JDRF volunteers thought it was a great idea, and the first Children’s Congress took place in 1999.
Over the years, 11 Children’s Congresses have occurred and over 1,000 kids with T1D have been delegates. This event has played a crucial role in receiving continuous government funding for T1D research while raising awareness of what it’s like living with the disease.
Children’s Congress takes place every two years and the next one will be held in 2025.
Renewing the Special Diabetes Program
This year’s event focused on renewing the Special Diabetes Program (SDP) and encouraging lawmakers to support policies that provide insulin at affordable prices. Currently, the SDP gives $150 million each year to T1D research through the National Institutes of Health (NIH). JDRF and NIH are able to collaborate in order to advance research as fast as possible. The program is scheduled to end in September, and renewing it is JDRF’s biggest priority and main focus for the delegates.
Currently, there’s legislation to renew the SDP for another two years at $170 million per year, which would be the first increase in annual funding in 20 years.
“The SDP is vital,” said Natalie Stanback, chair of this year’s event. “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!”
Delegates and T1D role models had 239 meetings with senators and representatives to advocate for support for the SDP and affordable insulin. Congress is expected to approve funding for the SDP, making life with T1D easier and shortening the time until a cure is found.
Attendees from all over
In addition to the kids chosen as delegates from all 50 states, as well as Washington, D.C. and JDRF’s five international affiliates, there were plenty of others in attendance. This year’s celebrity lineup included Katie Bone, an athlete and champion of American Ninja Warrior, Super Bowl champion Orlando Brown, Jr., Adam Schefter, an NFL Insider at ESPN, Derek Theler, an actor and producer and Jimmy Jam, a musician and award-winning producer whose son has T1D.
“Type 1 diabetes should be one of those things we can all agree on,” Jam said. “Diabetes doesn’t care if you’re a Democrat or a Republican. We can all agree that there should be research to improve the lives of those with diabetes. We can all agree that insulin should be affordable for all who need it.”
This year’s chair, Natalie Stanback, has a daughter and brother both living with T1D. She attended Children’s Congress in 2019 with her daughter and says seeing the impact and feeling the power of the event is the reason she, her husband and daughter went back this year.
“We loved the panels, the information and the ability to DO something,” Natalie said. “It was such a tangible validation and inspiration. I hope that such is the experience and take-away for all of the families and Delegates.”
Creating memories + friendships
In addition to sharing their stories with government leaders, the delegates were able to create lasting friendships, meet role models who have T1D and leave the event inspired to continue creating change to improve their lives and those of everyone else impacted by T1D.
If you are interested in attending Children’s Congress 2025, you may email childrenscongress@jdrf.org for more information. You can also connect with JDRF advocacy on Facebook, Twitter and Instagram to get involved!
