JDRF Children’s Congress: Inspiring the Next Generation of Advocates
Pictured above (L-R): Kabir Dewan, JDRF CEO Aaron Kowalski, Ph.D., and Kabir’s father Kamal Dewan at the JDRF 2019 Children’s Congress
Kabir Dewan is a second-year Morehead-Cain Scholar studying biomedical engineering, neuroscience, and chemistry on the pre-med track at the University of North Carolina Chapel Hill.
His journey with JDRF began when he was diagnosed with type 1 diabetes (T1D) at age 13, after suffering a stroke due to high blood sugar. The initial shock was soon replaced by a surprising feeling of relief. “I realized that the diagnosis was a blessing in disguise because I finally figured out what was wrong with me and could live a healthier, more fulfilling life,” he said.
JDRF reached out to his family with a Bag of Hope and “warm words from volunteers who offered support and advice,” Kabir remembered. The sense of community he felt with JDRF led to avid volunteering, including roles as the North Carolina Director of Teen Outreach, and Vice President and President of the North Carolina Youth Advocacy Team.
An Empowering Experience
In 2019, Kabir was selected as a JDRF Children’s Congress (CC) Delegate. In addition to meeting his U.S. Senators and Representative from North Carolina, as well as fellow Delegates and celebrities with T1D, Kabir delivered an impactful speech thanking the CC corporate sponsors.
“The receptiveness of legislators and aides on Capitol Hill was very inspiring,” he said. “They reassured me that they were willing to make legislative changes to fund research and get us closer to a cure.”
Elena Purdy, Senior Manager of JDRF Grassroots Advocacy, said the empowerment Kabir felt is shared by many. “The Delegates leave the event knowing they can do anything they set their minds to,” she said. “It’s just amazing to witness year after year.”
JDRF reached out to his family with a care kit and “warm words from volunteers who offered support and advice,” Kabir remembered. The sense of community he felt with JDRF led to avid volunteering, including roles as the North Carolina Director of Teen Outreach, and Vice President and President of the North Carolina Youth Advocacy Team.
Giving a Face to T1D
Since 1999, the JDRF Children’s Congress has invited youth with T1D to Washington, D.C., to meet with Members of Congress and other policy makers to educate them about what it’s like to live with T1D, and to explain why Federal support for research and affordable access to a range of T1D management tools are so critical.
“Children’s Congress gives a face to T1D,” said Purdy. “It helps our national decision makers better understand the financial, medical, and emotional costs of the disease, and what they can do to help.”
JDRF 2023 Children’s Congress Delegates will focus on several advocacy initiatives:
- Creating significant support within Congress for a renewal of the Special Diabetes Program (SDP), which currently provides $150 million/year for T1D research through the National Institutes of Health (NIH).
- Engaging the FDA to ensure regulatory policies provide optimized pathways for approval of T1D therapies and devices.
- Ensuring T1D screening and monitoring is more widely accepted in the U.S. healthcare system.
- Accelerating progress towards more affordable insulin.
Kabir encourages anyone thinking about applying for JDRF 2023 Children’s Congress to go for it. “It will be one of the most fulfilling and meaningful experiences you have,” he said.
Bridging T1D and Cultural Divides
The more Kabir got involved with JDRF, the more he wanted to educate others about T1D. While at home during the COVID-19 pandemic, he wrote a memoir, L1V1NG: A teenager’s inspiring journey with type 1 diabetes. It was a way for him to share the lessons he learned.
“The book details my diagnosis and, more importantly, my recovery from it to inspire other people with T1D to not give up hope in the face of adversity, and to help them find their ‘new normal’,” he said.
Kabir was also a featured panelist for a JDRF Facebook Live event, where he discussed living with T1D as a young adult member of the Asian American Pacific Islander (AAPI) community. By sharing his story, he hopes to bridge cultural divides within the management of T1D.
“From figuring out carb counts for traditional Indian foods through trial and error to adapting insulin doses around the aspects of my cultural identity that impact my lifestyle, I want to assure other AAPI-identifying people with T1D that there are others out there with similar backgrounds dealing with the same issues,” he said.
A Bright Future
Kabir’s advocacy work didn’t end with JDRF 2019 Children’s Congress. This year, he joined JDRF’s new Advocates in Action Council for young adults as a member of the leadership team.
As he thinks about his future, Kabir knows JDRF will be part of it.
“I see myself wrapping up my medical residency and beginning my career as a doctor in a hospital setting while also, as a result of the JDRF 2019 Children’s Congress, remaining a lifelong advocate for people living with T1D.”
JDRF 2023 Children’s Congress® applications are open now through November 30 at cc.jdrf.org.