FDA Welcomes Teen Perspective During Children’s Congress

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What would intimidate even the most seasoned speakers had little impact on the three teens who met with the Food and Drug Administration (FDA) on behalf of JDRF and the type one diabetes (T1D) community.

The teens have already been through so much. Sharing their stories of living with T1D, they said, is easy in comparison.

“Having something you can’t control hold you back is pretty miserable,” said Hayden Kirk, 16, of Atlanta. “But when you talk about advances and work happening for a cure, that’s nice—that’s when you see hope in everyone’s eyes.”

Hayden and two other youth delegates attending JDRF Children’s Congress 2019 thanked members of the FDA for reviewing and approving both clinical trials and new therapies for T1D.

“Each of these delegates has been personally touched by the work you do here,” JDRF CEO and President Aaron J. Kowalski, Ph.D., told the panel. “We are here to thank you for your support.”

JDRF frequently meets with the FDA to share the impact that key advances FDA is reviewing can have on the T1D community, explain the complexities of the disease and the need for innovation to improve lives today while research aims for cures for tomorrow.

Hayden Kirk shared with the FDA staff his experience of participating in a clinical trial of an artificial pancreas system and of using the new technology now on a daily basis.

“The new technology makes my life a whole lot easier, especially when doing sports,” Hayden shared.

Elizabeth Link, 16, of Inver Grove Heights, Minnesota, told the group that she agreed to participate in a two-year clinical study of an immunotherapy when she was newly diagnosed because she knows that the studies are critical to advancing science and finding cures.

“Participating in the study gives me hope that cures are in the near future,” Elizabeth said.

Sam Southwick, 16, of Sioux Falls, South Dakota, talked about the struggles of managing T1D while still pushing to be an athlete, student and teenager, and also participating in a clinical trial that used his own cells to try to preserve the function of insulin-producing beta cells.

“I want to do my part by participating in research to help myself and others. I don’t want to live with this disease forever,” Sam said.

JDRF hosts Children’s Congress every two years, bringing youth delegates and celebrity role models from all over the country and world to advocate for Congressional support for T1D research and support. This year, the ask is for Congress to renew the Special Diabetes Program, which funds $150 million in research each year, while also thanking officials like those at the FDA for their work in advancing critical research and approving innovative therapies.

Take a minute to hear two of the delegate’s stories through their own videos.