I was so lucky to have the opportunity to attend the JDRF Children’s Congress in Washington, D.C. from July 8th through July 10th. Attending were 161 kids from every state in the nation and from six foreign countries, all between the ages of 4 and 17 and all with T1D. The three days were packed with activities and here are some of the highlights:
Children’s Congress Delegates and Crystal Bowersox performing “Promise to Remember me”
All of the kids were joined by American Idol runner-up Crystal Bowersox to sing the “Promise To Remember Me” song. Many of the parents were crying as they watched us sing. That evening, some of the kids also exchanged items they had brought to represent their home states. I brought small pins that were in the shape of Delaware with a Blue Hen on them, which were a big hit with the other delegates.
Miami Heat player, Ray Allen, wearing the Delaware Blue Hens pin I gave him.
The highlight for me was the Town Hall meeting. We sat with a panel of role models who all have T1D and were there to tell their stories. They also told us how they haven’t let diabetes stop them from fulfilling their dreams. The panel included Mary Mouser, a 17 year old actress, who has appeared in the movie Frenemies and in the TV show Body of Proof; Top Chef’s Sam Talbot, who talked about healthy cooking and eating and how eating foods that are unprocessed is so good for blood sugar; race car driver, Charlie Kimball, who recently came in second in the Poconos 400 race. He shared that his race car instrument panel not only shows his speed, gas, and other driving related items, but also shows his blood sugar! His racing helmet has two taps attached, one which gives him water and one which gives him orange juice in case his blood sugar goes low during a race. Also in attendance was Olympic gold medal winner, Gary Hall, Jr., who I talked to for twenty minutes at the hotel pool that evening. He told me that during one of his short Olympic races his blood sugar was 150 when he got into the pool and 600 when he came out of the pool, all because of an adrenaline rush. I was most excited to meet NBA Heat basketball star, Ray Allen, who was there because his six year old son, Walker, has T1D. After the Town Hall I walked over to Mr. Allen and gave him one of our Delaware pins for his son. He liked it so much, he put it on his own jacket lapel, telling me that he did that in the Olympics too!!
This was the day that all the kids would go to Capitol Hill to speak to their Congressmen and Senators about continued funding for the Special Diabetes Program (“SDP”). This program is SO important for people living with T1D because the new technologies they are working on are breaking ground to make our lives easier. These technologies will help control blood sugar with advanced insulin pumps and insulin, and auto-controlled blood sugar monitors. And they are also working on the artificial pancreas and islet encapsulation (which Jeffrey Brewer, CEO of JDRF told us will truly change the lives of people with T1D).
If the funding isn’t renewed, these technologies will STOP. JDRF contributes $110 million per year and the government contributes $150 million per year to this research. If the government funding stopped, it would be impossible for JDRF to make up the loss of that money. Therefore the funding MUST continue.
This is our path to a cure and to a better way of life. I met with Senator Carper, Senator Coons’ aide and Congressman Carney to talk about supporting JDRF. I also presented them with the scrapbooks I made for them, detailing how diabetes affects my everyday life (my scrapbook included photos of me playing sports, going on vacations, driving, and other daily activities that are affected by having T1D). All three seemed very supportive of JDRF’s mission and were very positive in their support of continued funding of the SDP.
This is me meeting Vice President Joe Biden.
Next on the agenda for Day 3 was a photograph with all of the delegates, celebrities and a SPECIAL GUEST!! Everyone was assembled in one of the Senate buildings until the Special Guest arrived – it was the Vice President of the United States, Joe Biden. V.P. Biden addressed the kids by saying that diabetes doesn’t define our lives or who we are, and that we have the ability, if we put our heads together, to get this all fixed. It was very inspiring. Everyone posed for the group photograph and then the kids surrounded the V.P., talking to him and some even taking “selfies” with him. I even got the chance to tell him I’m from Delaware, go to school at Tatnall and was a camp counselor for two of his grandchildren. He smiled, put his arm around me, patted me on the chest and said “we’re neighbors”!
Last, but not least, we all got to attend a hearing in front of the United States Senate Special Committee on Aging. The people testifying were TV and Broadway actress, Jean Smart (who has had T1D for almost fifty years), Ray Allen (with Walker sitting next to him), a doctor from the National Institute of Health, Jeffrey Brewer and a young delegate from Maine. Each person told their story in front of the Senators and Congressmen and then were open for questions. Everyone on that Committee seemed very supportive of JDRF and continued funding of the SDP.
To summarize, attending the Children’s Congress was one of the most amazing things I have ever gotten to participate in and I thank JDRF for giving me this opportunity. I want to take my new knowledge and keep doing all I can to find a cure.