JDRF Children’s Congress: Creating Advocacy Warriors

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Katie Bone competing on American Ninja Warrior

Pictured: Katie Bone competing on Season 14 of American Ninja Warrior

The terms “type 1 diabetes” and “ninja warrior” aren’t usually connected.

That is, unless you’re Katie Bone, a 16-year-old with type 1 diabetes (T1D) from New Mexico who appeared on the latest season of the hit show American Ninja Warrior.

Katie is a high-level athlete who has been a part of the JDRF family since her T1D diagnosis at age 11. “Almost immediately after I was diagnosed, my family and I volunteered at the JDRF Gala,” Katie recalled. “That encouraged me and made me want to get more involved.”

Since then, Katie and her family have volunteered regularly at Galas and One Walks, doing everything from starring in videos to loading trucks for events.

“Through it all, from the Bag of Hope to the events, JDRF was the message of hope and the greater connector within my community,” Katie said.

But it was her participation in Advocacy meetings that made her want to spread JDRF’s message of hope on a larger scale.

Making Special Connections

Former U.S. Representative Deb Haaland, New Mexico with Katie Bone
Former U.S. Representative Deb Haaland with Katie Bone

Katie was a JDRF 2019 Children’s Congress Delegate and met with her U.S. Senators and Representative to advocate on behalf of people in New Mexico living with T1D. She connected with other children living with T1D, professionals who achieved career success while managing T1D, and even celebrities who shared their T1D stories. The experience made her feel like she could achieve anything.

“All of the information gave me hope for my own future and to achieve my dreams while managing T1D,” Katie said.

Her time with former U.S. Rep. Deb Haaland (now U.S. Secretary of the Interior) was particularly special. Rep. Haaland was so moved by Katie’s story and the scrapbook she shared about living with T1D, she gifted Katie a scarf from her personal collection to show her gratitude. “It was very moving,” said Tammy Bone, Katie’s mother.

Advocating for Awareness

Since 1999, the JDRF Children’s Congress has invited youth with T1D to Washington, D.C., each year 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 Elena Purdy, Senior Manager of JDRF Grassroots Advocacy. “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:

  1. 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).
  2. Engaging the FDA to ensure regulatory policies provide optimized pathways for approval of T1D therapies and devices. 
  3. Ensuring T1D screening and monitoring is more widely accepted in the U.S. healthcare system.
  4. Accelerating progress towards more affordable insulin.

Climbing Walls…and Breaking Some Down

Katie’s accomplishments on American Ninja Warrior have been “amazing,” but being a high-performance athlete with T1D does require an extra level of preparation. “The potential for sometimes long hours, overnight filming schedules, and even having a quite low blood sugar at semi-finals when it was time to run were some of the unique challenges I had to overcome,” Katie said.

Katie’s fellow competitors have told her that since meeting her, they have looked up information on T1D and had no idea how hard it can be to manage, particularly for athletes. Katie knows her performance puts a spotlight on her T1D, and she’s totally okay with that. “To have a platform from which I can show other kids that it’s okay to wear their medical devices and it doesn’t make you weird or prevent you from achieving your goals is just incredible,” she said.

Just Do It

Katie encourages all kids with T1D to apply for JDRF 2023 Children’s Congress. “Don’t be afraid of the what ifs,” she said. “What if it’s great? Just do it!”

She is looking forward to a future as a professional athlete and knows nothing will stop her. “Children’s Congress gave me a clear belief that I can truly achieve anything…regardless of T1D!”

JDRF 2023 Children’s Congress Delegates will be announced in March 2023.