Pleasanton teen attends Children’s Congress to lobby for diabetes funding

The 10th-ever Juvenile Diabetes Research Foundation (JDRF) Children’s Congress took place earlier this month in Washington, D.C., with Pleasanton’s own 17-year-old Jeremy May in attendance.

May and other delegates spent the three-day trip advocating for federal funding for diabetes research and support while also striving to bring to the lawmakers’ attention the daily struggles of Americans living with type 1 diabetes, from the high cost of insulin to impractical family insurance plans.

“There were a lot of different stories about people, like personal stories, but then there was also collectively, as a group of diabetics, ‘These are the daily struggles that we go through,'” May told the Weekly during an interview last week.

May, an incoming senior at Amador Valley High School, joined forces with over 160 young delegates in representing all 50 states from July 8-10 as they lobbied members of Congress to sign off on continuing to fund type 1 diabetes research.

The nonprofit JDRF funds type 1 diabetes research, advocates for policies that protect the interests of people with type 1 diabetes and serves as a support network for those facing type 1 diabetes around the world. Its Children’s Congress takes place every two years and aims to empower youth with type 1 diabetes to make a positive change for people with the disease.

May, who was diagnosed with type 1 diabetes at age 11, has participated in many JDRF One Walk events, helped chair the San Francisco One Walk, and served as an avid mentor and JDRF youth ambassador to raise awareness in the local community.

A national JDRF volunteer committee selected the Pleasanton teen to be a delegate from more than 1,200 applicants between ages 4-17. As a delegate, May was responsible for discussing common issues facing diabetics today with his fellow delegates and with the aides of national legislators on Capitol Hill.

In D.C., May worked alongside other delegates from California to demonstrate to Sens. Dianne Feinstein and Kamala Harris and U.S. Rep. Eric Swalwell, and their staffs, the importance of a five-year renewal of funding for the Special Diabetes Program (SDP) — a program that provides $150 million annually to the NIH for type 1 diabetes research. At previous Children’s Congress events, the JDRF only sought two-year renewals.

The delegates shared personal testimonies at a hearing before the Senate Special Committee on Aging to highlight challenges of living with type 1 diabetes that they had personally faced, as well as the need for continued funding of research projects. Although May was not chosen to speak at the hearing, he was in attendance.

“The senators were really ecstatic to see us, and it felt pretty cool being personally thanked by a lot of important people. It meant a lot that they cared about (type 1 diabetes),” May said, later adding:

“There were a couple stories that were told by the younger children that were pretty crazy to hear.

“There were a lot of very accomplished type 1 diabetics there and a lot of stories about how way back in the day they had to sharpen their syringes and boil them, but how they overcame that. I think that really helped — well, made me emotional — but made a lot of the senators just feel more compassionate and care more about the cause.”

May said he firmly believes the solution to a better life for type 1 diabetics lies in new technology.

“If what we did works, not only will (a renewal of the SDP) be affecting me but every diabetic,” he noted. “The technology is a lot of money to research and produce and get out there. With the influx of funding, we can get a lot closer to a cure for diabetes.”

“Some of the older, accomplished type 1 diabetics taught me that there’s really nothing holding you back and you can accomplish the same thing as anyone else can — there’s just that little speed bump in the road,” May said, as he reflected on his week in Washington.

Now that the Children’s Congress is over, May plans to continue serving as a type 1 diabetes advocate by participating in clinical trials to assist in type 1 diabetes research.

“(Children’s Congress) was a pretty big one for me; I’ve been trying to do this for a couple years. But we can’t stop just because we’ve accomplished something, we gotta keep going and gotta keep trying to do new things and hopefully new things arise,” he said.

With one more year left of high school, May described his outlook on becoming a young adult, and more independent: “By the time I go to college, there will be pretty set technology, but nothing close to where we need to be.”

“If you want something to be done, you have to fight for it and you can’t let anything hold you back,” he said. “Something like diabetes cannot define who you are, so you have to get around that and fight for what you want and fight for your dreams. You have to work hard, but there shouldn’t be anything stopping you from accomplishing your dreams.”