JDRF Children’s Congress: Shaping Future Policymakers

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Berkeley Barnett and her dad, Joel Barnett, at the JDRF 2015 Children’s Congress

Pictured above: Berkeley Barnett and her dad, Joel Barnett, at the JDRF 2015 Children’s Congress

Berkeley Barnett grew up in Austin, Texas, wanting to be a doctor.

She was diagnosed with type 1 diabetes (T1D) in 2004 when she was 5 years old, and the medical field always seemed like a natural fit.

“I think the reasons [for my career path] were a combination of all the time I spent in the doctor’s office as a kid and the idea of wanting to help people,” she said.

Berkeley’s family got involved with JDRF shortly after her diagnosis—the organization played a huge role in her life. “I always viewed them as a second family,” she said. “I felt very empowered by JDRF to not let my T1D define me.”

Berkeley’s dad, Joel, serves as a JDRF Advocacy Team Chair (ATC) for the Southern Texas Chapter. As an ATC, he helps engage and grow advocates at the chapter level, build relationships with Members of Congress, and take action via virtual campaigns and social media. He encouraged Berkeley to use her voice on a larger scale and to apply to participate in JDRF Children’s Congress (CC).

“We had done a Promise to Remember Me meeting with Texas Congressman Roger Williams—Berkeley loved it, and she was composed and well spoken,” he said. “He listened to her and asked questions and, when the time came, supported JDRF initiatives. That was powerful, and the ability to go to Washington to see it in action was a once-in-a-lifetime experience.”

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 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.”

Berkeley was a JDRF 2015 Children’s Congress Delegate, meeting with her U.S. Senators and Representatives to advocate for T1D research funding. “Children’s Congress will always be one of my favorite things I’ve done,” she said. “I truly cherish the memories and impact it had on my life.”

Not only did the advocacy work make an impression on Berkeley, so did the people she met. Many of her fellow 2015 CC Delegates are now her lifelong friends. “It’s so much fun to watch everyone grow up and do amazing things in the T1D world,” she said.

JDRF 2015 Children’s Congress was also a bonding experience for Berkeley and her dad—it’s a bond that continues to this day. “He’s my guy when it comes to advocacy,” she said. “I can’t imagine advocating up on the Hill without him!”

Discovering a New Path 

Berkeley during her 2019 JDRF internship
Berkeley during her 2019 JDRF internship

Berkeley was in her second year at Rhodes College in Memphis, Tennessee, still on the pre-med track, when she saw an opportunity on the JDRF Advocacy website for an internship. 

That experience changed the course of her life.

“I had always been passionate about advocacy and very interested in the government,” she said. “The internship made me realize that I could help people and make a difference, without being a doctor.”

The first person she shared the news with was her dad.

“I have a vivid memory of being surrounded by all the kids at JDRF Children’s Congress in July 2019 and texting my dad: ‘Dad, I’m not going to medical school,’” she recalled. “His reply, of course, was ‘I know.’” 

A Full Circle Moment  

Berkeley working in Washington, D.C., today
Berkeley working in Washington, D.C., today

After graduating from Rhodes College in 2020, Berkeley got a job in Washington, D.C. as a Staff Assistant for the U.S. Senate Committee on Health, Education, Labor, and Pensions (HELP). “It was a full circle moment,” she said.

Today, Berkeley works in Washington, D.C., at a public affairs consulting firm. Her advocacy work with JDRF hasn’t stopped, though. This year, she joined JDRF’s new Advocates in Action Council for young adults as co-chair of the leadership team.

An Exciting Year Ahead

JDRF 2023 Children’s Congress will take place July 9-11, 2023—the first time it is being held since 2019 due to the pandemic. The excitement is building in JDRF Advocacy, with an event schedule already packed with educational sessions, social events, and a Senate hearing.

“Children’s Congress is truly a once-in-a-lifetime opportunity for kids with T1D,” Purdy said. “Seeing the Delegates feel a sense of empowerment and learn to use their voices is just incredible.”

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.

Berkeley urges anyone looking to make a difference in the T1D world to apply for JDRF 2023 Children’s Congress. “It helped shape me into who I am and inspired me to work towards making the world a better place…especially for people with T1D!”

JDRF 2023 Children’s Congress® applications are open now through November 30 at cc.jdrf.org.