Over the summer, Sophie Rinzler (7th Grade - Bell) traveled to Washington, D.C. with her diabetes organization, the Juvenile Diabetes Research Foundation (JDRF), to lobby Congress for the renewal of the Special Diabetes Program, as well as a few other matters such as making insulin more affordable, covering preexisting conditions and continuing to provide strong funding for the NIH and FDA.
Read her story. . .in her own words.
My name is Sophie Rinzler. I am twelve years old, and am entering 7th grade at Robert E. Bell Middle School. I have type one diabetes (T1D) which is an autoimmune disease that means my pancreas doesn’t produce insulin, a hormone that when mixed with carbohydrates makes glucose, which gives your body energy.
Over the summer, I traveled to Washington, D.C. with my diabetes organization, the Juvenile Diabetes Research Foundation (JDRF), to lobby Congress as part of the biannual event Children’s Congress (CC). We advocated for the renewal of the Special Diabetes Program (SDP), as well as a few other matters such as making insulin more affordable, covering preexisting conditions and continuing to provide strong funding for the NIH and FDA.
Getting in was not an easy matter. This required writing sample letters to my members of Congress and writing blurbs about myself to let the officials in charge get a better sense of why I should be accepted as one of 160 kids aged 4-17 from across the country. They received over 1,000 applications this year! I was so sure I wouldn’t get in, because it was only my second time applying, but then I got an information packet in the mail telling me I was selected!
Before D.C., I needed to do a variety of things. One of the first things I needed to do was to make a YouTube video for my delegate page on the JDRF website to let the other delegates, as well as the rest of the world, know a bit about me.
I also needed to: attend monthly informal video conferences, write letters to my members of Congress requesting meetings, prepare scrapbooks chronicling my life with T1D to leave with my congressmen and do social media challenges to spread more awareness. (I now share posts on Instagram -- @typeonesophie -- about my day to day life with type one.)
I also needed to research more about what we were lobbying for. The main thing we were pushing was renewal of the Special Diabetes Program (SDP), which provides $150M annually towards research making type one more manageable, and eventually curable. However, it was only made for two years and would be expiring in September 2019. When researchers like JDRF need to stop and wait for the funding to continue again, there are many issues with trials and research programs. So this year, we asked for five years instead of two for $150M. Another thing we brought up is the insulin affordability crisis. A small vial of insulin I need to survive is the sixth most expensive liquid in the word, especially in the US. Many diabetics that have difficulty affording it purchase it illegally, ration it or cross the border to Canada where the prices are significantly lower. People are dying because they aren’t able to get the insulin they need because they can’t afford it. It needs to end.
Before CC, I was fortunate enough to meet the other delegate from my JDRF chapter, Chandler. Chandler is an 11 year old boy that lives in Greenburgh, and he volunteered at the annual JDRF Gala alongside me. I was also lucky enough to do a local interview, with Chandler, for The Examiner.
The big day came too soon! Once in D.C., they had an action packed agenda for us delegates! The first day was all about getting to know the other delegate, as well as seeing how having T1D shouldn’t stop you from doing anything. They had police officers, teachers, FBI agents and more, all of whom had type one and didn’t let it get in their way. That night, one of the representatives from upstate New York, Rep. Tom Reed, led all 10 New York delegates on a private night tour of the Capitol!
The second day was mainly focused on things relating to a panel of celebrities who had type one. From Adam Schefter (ESPN reporter, the only non-type one in the group--his wife has type one) to Derek Theler, Victor Garber and Jennifer Stone (actors) to Christina Martin, Lauren Cox and Fiona Wyle (athletes) to Ryan Reid (racecar driver) to Aaron Kolwalski (JDRF CEO), they all had such inspirational stories and were all such incredible people to meet! After that us delegates got a bit more information about the congressmen we would be meeting the next day.
The third, and final day, was the day of the Capitol Hill Blitz! Bright and early, we were shuttled off to Capitol Hill, where us delegates watched live testimony being presented about renewal of the SDP and everything else we were advocating for right in front of our eyes! The Special Committee of Aging, led by Senator Collins from Maine and Senator Casey from Pennsylvania listened to five incredible speakers about what we were fighting for, including two of our amazing delegates: 9 year old Ruby Anderson from Maine and 16 year old Adriana Richard from Pennsylvania. It was such a surreal experience, but not as surreal as the next part: talking to Sen. Schumer, Rep. Lowey and a staffer for Sen. Gillibrand! After that, the group parted ways as the event had ended, but we kept the memories we had made. It was the experience of a lifetime!
I’m so glad I took part in this event! It was such an amazing experience, and I’m so grateful I was able to be a part of it!