Highlights from Children's Congress Day One
The JDRF’s Children's Congress brought more than 160 delegates – children and teens living with type 1 diabetes – to Washington DC on Monday to prepare to make their case to lawmakers and to learn key leadership skills. Representing every state and several countries (UK, Australia, Canada, Denmark, and some others!), the delegates are specifically advocating for the renewal of the Special Diabetes Program (SDP), which currently provides $150 million annually for T1D research at the NIH. That funding, along with $150 million in funding for the Special Diabetes Program for Indians (SDPI) is scheduled to end on September 30, so the JDRF’s Children’s Congress – focusing on stories of medical need, courage, and resilience – is critical.
Lots of stories about how extensively new technology has helped patients were paramount – and young delegates impressed upon lawmakers how important this was to continue. A number of the volunteers also discussed the enormous success seen by the Indian Health Service and what an economic difference this has made in 35 states across a range of tribes – see this compelling infographic for more on the “sister” SDP program to JDRF’s! What amazing progress to see at both.
The young delegates representing JDRF were joined by parents, caregivers, and many thought leaders with diabetes. Diabetic luminaries included the only female FBI SWAT team agent, Senior VP of Advocacy for JDRF Caroline Marshall; competitive equestrian rider Ms. Morgan Panzirer; former Miss America and public health activist Dr. Nicole Johnson; professional football player Mr. Brandon Denson, and JDRF’s Dr. Aaron Kowalski, who discussed so much progress that SDP has enabled and so much need for more support so that this progress can be built upon and leveraged. He also shared compelling personal stories about the new PEAK program and his experience running over twenty marathons. All of the speakers had words of guidance and inspiration, and they had some attitude as well. A child asked FBI agent Marshall if she ever felt that others saw her as weak because she is female and has diabetes. Ms. Marshall said, “Well, I’m stronger than most of the guys on my team, so that doesn’t really come up.” YES!
The fun continued into the Welcome Dinner, where T1D celebrities and guardians found themselves in a sea of delegates in bright blue JDRF Congress t-shirts. The night began with a wonderful welcome from JDRF government leader Ms. Cynthia Rice, followed by Children’s Congress Chair Angie Platt, whose son, Jonathan, has diabetes, and who spoke so movingly in the hearing. We also heard from JDRF CEO and President Derek Rapp, who talked about Senator Susan Collins (NH), who of course has shown so much leadership in the past several days in Washington! Years ago, Senator Collins shared that she met a 10-year-old boy with type 1, and she was so touched by his story – the boy told her that he just wanted one day off from diabetes (his birthday? Christmas?) – that Collins started the first Diabetes Caucus in the US Senate. What a difference this has made, and how key her work has been with Senator Shaheen from New Hampshire, who spoke so movingly about her granddaughter Elle who is going to college this fall with her dog Coach who senses all her hypoglcyemia.
Rapp discussed how the Children’s Congress delegates played a huge role in advocating for Medicare coverage for CGM. The JDRF’s largest funders for Children’s Congress were also recognized: Lilly Diabetes, Novo Nordisk, Merck, Genentech, and PhRMA. The night concluded with each delegate introducing themselves on stage, and it was heartwarming to see the young 4- and 5-year-olds looking up to the teenagers.
Divya Gopisetty, Nikhita Gopisetty, and Coco Close contributed to this piece.