Voices raised for T1D research

JDRF 2019 Children’s Congress took place from July 8-10, 2019, in Washington, D.C. Every two years, more than 160 children living with type 1 diabetes (T1D) gather in Washington, D.C., to meet face-to-face with some of the top decision-makers in the U.S. government. The children, ages 4 to 17, represent all 50 states and the District of Columbia.

The delegates in JDRF’s Children’s Congress experienced a once-in-a-lifetime opportunity to help Members of Congress understand what life with T1D is like and why we need continued funding for research projects such as the Special Diabetes Program (SDP).

Since the Children’s Congress, a bill to renew the SPD has been approved by the House Energy and Commerce Committee. We are one step closer to long-term renewal of the SDP thanks to the leadership of Representatives Diana DeGette, Tom Reed, Frank Pallone, and Greg Walden. We are also grateful to Senator Jeanne Shaheen, U.S. Senator Susan Collins, Senator Tom Carper, and Senator Kevin Cramer for introducing the Insulin Price Reduction Act, which would treat insulin like the life-saving drug that it is.

Track the continued Children’s Congress updates on social media following @JDRFAdvocacy and @JDRF, and #JDRFCC19. Watch the Senate hearing here.

Four kids from the Bay Area were among the delegates in attendance at the 2019 JDRF Children’s Congress: Jonah Cohen, 11 of San Francisco; Jamie Kurtzig, 15 of San Anselmo; Jeremy May, 17 of Pleasanton; and Thomas Screven, 16 of Portola Valley. We thank them for their advocacy and asked each of them about their experience:

Jonah Cohen, 11, San Francisco: I met with staff for Senator Harris Senator Feinstein and Speaker Pelosi. We spoke about the need to renew the SDP and make insulin affordable. One of Speaker Pelosi’s staff members brought me out to the Speaker’s Balcony of the Capitol building and I got to take the underground subway from the Senate building to the Capitol! My favorite part of Children’s Congress was meeting kids just like me and making new friends. My biggest takeaway from children’s congress was realizing I can make a difference.

Jamie Kurtzig, 15, San Anselmo: I had the opportunity to meet with Kathryn Irwin (Senator Kamala Harris’s aide), Hermes Taylor-Weiner (Senator Dianne Feinstein’s aide), and Jordan Sciascia (Congressman Jared Huffman’s aide). I absolutely loved talking to actor Victor Garber (he has had T1D since he was 11) because he is in my favorite movie (Legally Blonde) and was so open and funny. I also loved meeting with my members of Congress and telling them my story (I was so happy they were really supportive of our JDRF agenda of renewing the SDP). My biggest takeaway was how impactful personal stories can be on members of Congress. I learned that Senator Collins decided to co-chair the Senate Diabetes Caucus because of previous Children’s Congress Delegates who told their stories. This takeaway inspired me to be honest and open about my life with T1D while meeting with members of Congress. I had such a great time at 2019 Children’s Congress, and I hope the SDP gets renewed before September 30!

Jeremy May, 17, Pleasanton: I loved being a part of JDRF‘s children’s Congress and being in Washington DC. I loved all the energy and excitement of myself and all the delegates working hard to hopefully bring about important changes for the diabetic community. While all three of my senators and congressmen were not able to meet with me, we were able to meet with people from their office, and I was very happy to hear that they all were supporting our cause.

Thomas Screven, 16, Portola Valley: It was a tremendous experience to be a delegate at JDRF Children’s Congress. I came away feeling energized and humbled. I was fortunate enough to have the opportunity to meet with the staff of Representative Anna Eshoo and the staff of Senator Dianne Feinstein. My favorite part of Children’s Congress was meeting the other delegates. It was wonderful to get to know other kids who battle the same things that I do. I was very impressed with the dedication that every single delegate brought to advocating for type 1 issues. The JDRF team did a great job organizing the event. I deeply appreciate their talent and commitment. My biggest takeaway from Children’s Congress is that as long as we have passionate people at JDRF and resilient children who are advocates, we will find a cure.