What Did 15-year-old Amelia Tell Congress about Her Experience with Type 1 Diabetes?
By Amelia Cooper
Twitter summary: Read 15 y/o Amelia’s top 5 highlights from @JDRF Children’s Congress 2015!
15 year-old Amelia Cooper was one of over 150 children who visited Washington, DC as delegates for JDRF’s Children’s Congress on July 13-15. She and other children and adolescents with diabetes testified to a Senate panel regarding what it’s like to live with diabetes and why it’s important to continue supporting innovative research for diabetes. We’re excited to present Amelia’s top five highlights from her experience at Children’s Congress!
Amelia’s Top Five Highlights:
This summer, I was super lucky to be a delegate to the annual JDRF’s Children’s Congress. It was such a terrific experience that I wanted to share my top five highlights so that diaTribe readers could get a sense of what it was like!
Finding my passion for advocacy. Since being diagnosed three years ago, at age 12, I have been overwhelmed by the relenting duties of this disease. The 24/7 attention I need to pay to my health can be stressful. Being able to go to Washington DC and tell my story to lawmakers gave me more passion to fight to make my life and the lives of other people with diabetes better through more research, better devices, and ultimately, a cure.
Meeting kids like me from around the US. The very first day of the Children’s Congress kicked off with a Delegate Social, giving us the opportunity to meet and get to know one another. I met so many other teenagers that were doing great and interesting things. They had to deal with diabetes, but they all overcame the daily obstacles and were succeeding academically, athletically (in rock climbing, ballet, track, and more!) and socially.
Touring the Hill. As a high school student, being able to see the hustle and bustle of making the government work was a thrill. To prepare for our meetings on the Hill, the Delegates went through a “Hill Blitz” training session, where we learned how to thank the members of Congress for renewing the Special Diabetes Program and to encourage them to cosponsor certain diabetes bills. On the Hill, I met Senator Blunt, Senator McCaskill and Representative Cleaver. Senator McCaskill asked about my research on altitude and blood sugar, Senator Blunt was interested in the environmental effects of my OmniPod disposal, and Representative Cleaver shared his grandfather’s struggle with diabetes. Moreover, several of their aides were extremely well-versed in diabetes and medical issues. It really gave me hope!
Meeting successful actors, athletes and musicians with T1D. The celebrity Town Hall was a great way to hear from people who have worked hard to achieve their impressive goals while managing diabetes. My favorite was Nicole Johnson, Miss America 1999. Not only did she let me try on her crown, but she also helped me with my public speaking skills. She reminded me not to be intimidated by the senators – I know more about type 1 diabetes than they do (except maybe Representatives Diana DeGette and Ed Whitfield, Co-chairs of the Congressional Diabetes Caucus), and they’re the ones who can learn from me!
Testifying at a senate panel. The major highlight for me was that I was selected as one of the two kids to testify before the Senate Special Committee on Aging to tell Congress my story about the challenges and rewards of living with T1D – see my testimony here! Sitting at a big desk in front of a row of senators was super intimidating. I took a deep breath and told them what I had to say about being a teenager with diabetes and how tough it is: "When many of my peers are worrying about their hair, clothes, and social schedule, I must focus my attentions on things vital to my health." I also told them about how I use my CGM while skiing, explaining how I need more insulin when skiing at high altitudes. I wanted to show Congress how I live with type 1, and how I hope with their support we can move from type 1 to “type none.” As I told them, "35, the number of countries I have visited, and still counting. 13.1: the number of miles in a half marathon; I have completed two so far. 10: the number of things I wished my parents knew when I was diagnosed with T1D. I wrote this article as a published author in diaTribe. Four plus, the number of years it takes to become a doctor like my dad, whom I look up to. That's my dream job. One: as in type 1, the number associated with my disease. I am hopeful that through Congress' support we will move from type 1 to type none.”
The JDRF Children's Congress was special for me because I was able to celebrate my three-year anniversary (“diaversary”) of being diagnosed by standing in front of Congress and thanking them. In all, my trip to Washington D.C. was really powerful - it reinvigorated me to keep fighting to stay healthy and advocate for medical research funding. As Senator McCaskill told me, “It’s your government.”
Thank you, Amelia, for sharing your experience and inspiring us to keep pushing for increased funding in diabetes research!