JDRF Volunteers Advocate for T1D

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Advocacy efforts have always been crucial for JDRF International – Heartland Chapter. In fact, it’s because of the grassroots efforts of those affected by type 1 diabetes (T1D) that JDRF was created in 1970. To this day, the commitment and passion of JDRF volunteers help move the needle of the agency’s mission forward.

“JDRF advocates help build and sustain critical support for T1D research funded by the federal government by raising awareness among members of Congress of the financial, medical and emotional costs of the disease,” said Jayne Ullstrom, Executive Director of the Lincoln and Greater Nebraska Chapter. “Through the years, advocacy volunteers have shared with local and state representatives how T1D affects them personally and how it affects their family as well as the impact of T1D on the community as a whole, leading to continued funding for research and regulatory policies that improve life for people with T1D until the day we find a cure.”

Advocates reach out to officials via email, letters, phone calls and face-to-face meetings, Ullstrom said. Advocacy priorities for JDRF include: supporting continued funding for the Special Diabetes Program (SDP), which provides $150 million a year in T1D research; ensuring U.S. regulatory policies provide clear and reasonable pathways for scientific research and therapy approvals; encouraging health plan policies to cover physician-prescribed T1D therapies at affordable costs; and advocating for national policies that protect those with chronic diseases like T1D.

One opportunity for getting involved in advocacy efforts is through the JDRF Children’s Congress, which takes place every two years. During the event, children ages 4 to 17, representing all 50 states and the District of Columbia, gather in Washington, D.C., to meet with Congress and share their stories as well as ask for support for JDRF funding priorities, including the Special Diabetes Project, said Joe Hornung-Scherr, who has been involved with JDRF since 2011, when his son Sawyer was diagnosed with T1D.

In 2017, Sawyer was one of four Nebraskans selected to participate in the Children’s Congress, where he was able to meet with and share his story with representatives from Nebraska or their aides, including Sen. Deb Fischer. “She was willing to meet with us and talk and hear what we had to say, which I appreciated,” Sawyer said.

Advocacy opportunities like this are so important, and Joe said he stays involved because he and his family have a vested interest in a cure for T1D and more research to make that happen. “This advocacy not only helps Sawyer but the millions of others who need someone to advocate for them,” he said. “It’s also an opportunity to educate others about T1D.”

Community Health Charities of Nebraska (CHC-NE) donors help with advocacy efforts such as these, as their gifts help to keep the doors of JDRF Lincoln and Greater Nebraska open. “This allows our advocacy efforts to not just continue but also to grow in scope and influence,” Ullstrom said. “Your donations give those with T1D a stronger voice.”

And these donations are able to go far, thanks to the great leadership from the JDRF staff and Board of Directors, Joe said. “We are lucky in Lincoln. Whatever people give and do for JDRF, it’s not going to be wasted.”