JDRF Advocates, A Voice for the T1D Community

in , ,

JDRF Advocates

JDRF’s mission requires strong partnerships with Federal government leaders, regulatory officials, and insurance providers. JDRF Advocates use the most powerful tools they have—their own personal stories—to communicate the financial, medical, and emotional costs of type 1 diabetes (T1D) to our nation’s leaders. Meet four JDRF Advocates who are using their voices to raise awareness and power progress.

Alfred Stark

“We can’t be the vote, but we can be the voice.”

JDRF Advocate Alfred StarkAlfred Stark grew up in a self-proclaimed ”farm family” in northeast Nebraska. He has lived with T1D since 1980, but the advances in T1D management tools and technology in the last 15 years astound him. ”The continuous glucose monitor (CGM) was life-changing,” he said. “After my diagnosis, it took me two days to get used to giving myself shots, but it took 30 years for me to get used to finger pricks.”

Alfred became a JDRF Advocate in 2016, because he felt strongly about the importance of supporting Federal funding of T1D research. “The whole point of advocacy is education and information. We can’t be the vote, but we can be the voice,” he said.

He regularly meets with his Senators at “Nebraska Breakfasts,” a weekly opportunity for residents to discuss issues important to them. He’s such a frequent participant that Senators now introduce him to new attendees and explain the work JDRF is doing.

In recent years, Alfred has developed vision problems. He believes technology like CGMs and other devices have the potential to prevent T1D-related complications. ”I’m thoroughly convinced that almost none of the people diagnosed with T1D in the last decade who have a CGM are going to have these issues,” he said.

Alfred will keep fighting for progress for as long as it takes. “Having type 1 diabetes is a long journey. And it can be frightening. But to be able to walk alongside people who are making a difference? Well, it’s just wonderful.”

Lara and Aaron Schwager

“Being JDRF Advocates means working for something that’s tangible.”

JDRF Advocates Lara and Aaron SchwagerAfter Aaron’s Schwager’s T1D diagnosis at age 7, his mom, Lara, immediately jumped into action. “She joined all the JDRF boards,” he joked.

Over the past 13 years, in addition to being a community board member and an Advocacy Team Chair for Southern New Jersey, Lara now serves as the Grassroots Leadership Team lead for New York Metro and Greater Delaware Valley. She has attended numerous Government Day events in Washington, D.C., and Promise to Remember Me meetings. It’s a passion driven by hope. “I can’t be a doctor. I can’t find a cure. But I can use my voice and use it well,” she said.

Lara’s activism inspired Aaron. He became highly engaged in advocacy work and was a JDRF 2015 Children’s Congress Delegate. He’s now on the leadership team for the newly formed Advocates in Action Council, a community of young adults who support the advancement of JDRF’s advocacy priority areas. “Being a JDRF Advocate gives me an opportunity to tell the people making the decisions how T1D affects me and my family,” he said. “Getting them to see it first-hand is really effective.”

Lara recalled a moment during the JDRF 2015 Children’s Congress when the New Jersey Delegates showed their CGM readings to their Member of Congress. ”One CGM read 50, one read 300,” she said. ”It was an incredible way to show that everyone’s story is unique, but the daily management challenges are all the same. If someone is on the fence about supporting T1D research, those personal stories push them over the fence every time.”

Aaron is entering his junior year at the Rochester Institute of Technology, and while he hopes to land his dream job someday, he is also acutely aware of his need for good health insurance. This potential sacrifice is what keeps Lara going. “Being JDRF Advocates means working for something that’s tangible,” she said. ”I actually feel like I’m easing the burden for my son and for all the kids with T1D.”

Janna Gonzalez

“I’m showing my son, ‘Look, let’s do this together, manage it, and get through it.’”

JDRF Advocate Jenna Gonzalez and her son, NoahJanna Gonzalez’s son, Noah, has a heart of gold. “He is so caring and compassionate, he would give anyone the shirt off his back,” Janna said.

But that didn’t make his T1D diagnosis at age 7 any easier. After those initial “very hard” months, Janna made it her mission to learn everything she could about T1D so that she could empower her son to not just live with it, but thrive.

Shortly after his diagnosis, Noah attended a week-long summer camp for kids with T1D. Janna met another T1D mom there who introduced her to JDRF and encouraged her to get involved. Since then, their sons have become good friends and Janna has become a JDRF Advocate.

Her advocacy work started during the COVID-19 pandemic—she spent many hours on Zoom sharing Noah’s story with Representatives during JDRF’s Government Day campaign. She also became the Advocacy District Captain for Texas Congressional Districts 27 and 34, helping to grow the local base of JDRF Advocates and connecting with Members of Congress. 

Janna recently participated in a JDRF Facebook Live event for Hispanic Heritage Month, where she discussed the importance of outreach in overcoming language barriers. She hopes her voice will help her community become better informed on managing T1D and inspire others to join her efforts.

At the end of the day, Janna wants her advocacy work to put Noah’s mind at ease about his future. ”I’m showing my son “Look, let’s do this together, manage it, and get through it,’” she said. “The more people you meet, the more you’re going to learn so that you can educate and advocate for your child.”

Learn more about how you can become a JDRF Advocate at jdrf.org/join.