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Dressed in my suit, I headed down to the building over an hour early and when I arrived and got through security, I was sent to a line of full of teenage girls, Capitol Hill interns, and staffers. My first thought was "Oh gosh, I hope someone doesn't think I'm hear to only see Nick Jonas" as I straightened my suit jacket and motioned to my work badge. We were ushered into the room and I was happy to find a seat next to two moms of Children's Congress delegates. The ladies were so nice and one shared their son's scrapbook with me. I pointed to my black kit in my purse and told them I had type 1 also and was happy to be there with them.
The hearing started with opening remarks from many of the senators (and screams from the girls as Nick entered the room), some of which have an extremely close personal connection to type 1 diabetes. The celebrity panel asked to testify included Mary Tyler Moore, boxing legend Sugar Ray Leonard, head of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Dr. Griffin Rodgers, and Nick Jonas. Mary Tyler Moore, JDRF International’s Chairperson gave moving testimony on living with type 1 diabetes for the last 40 years, including suffering from diabetes complications including retinopathy. She talked about the struggles that she has experienced and also about the new advances in diabetes technology that she wished had been around when she was first diagnosed.
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Boxing star Sugar Ray Leonard spoke about diabetes impact on the entire family and explained that the cost of diabetes (and how it affected his family) is what lead him to professional boxing. He knew that if he went to college after coming home from his Olympic gold medal win in 1975 his family would be consumed by the debt from his father's medical costs. That's when he decided that if he went pro he would be to make money to help his family---and that's exactly what he did. I thought Sugar Ray had a great metaphor (fyi, I love metaphors- give me a visual, I understand!) about living with diabetes: Each day we go into the boxing ring with diabetes and sometime we put up a really great fight. Other days, we want to be like Leonard's opponent, Duran, during his 1980's fight and run to our corner and say "No Mas" (No more). But together, and with the help of Congress, we can look forward to "knocking out" diabetes once and for all.
Pop superstar Nick Jonas told his diagnosis story and explained that he focuses on the simple wins with his diabetes. Nick said that he believes all dreams can be accomplished, no matter the hardships of type 1 diabetes. He read the lyrics of his song "Alittle Bit Longer." After a brief break, the second set of panelists began to provide testimony. Hannah Ryder of Maine, Patrick Lacher, and Asa Kelly all shared their stories. Mrs. Gould, a mother of 4 children with type 1 diabetes, emphasized the importance of participating in medical research: it can't just be everyone else's job to find the cure, we must all participate and help wherever and whenever.
Hats off to JDRF for an amazing Children's Congress. Seriously, this was the first one that I got to see a piece of and it was really awesome to see the families and kids. I mentioned to my mom that thing that seemed to affect me most was seeing two girls (probably around the ages of 5 or 6) sharing their scrapbooks with each other and talking about their diabetes (one was running high and sipping water) and nodding about when they were diagnosed. Mixed emotions ran through me- I wanted to scream because I hate how this disease affects kids who don't have a choice. I wanted to cry because I kept thinking about how I hope someday those little girls don't have to talk to their boyfriends about dealing with diabetes. I wanted to smile because I saw how this disease brings people together.
(photos courtesy of JDRF's website, since I was so far back that the only shots I got were of Senators Collins and Lieberman and they are blurry)
Very cool stuff! Thanks for the round up. :-)
ReplyDeleteHi Allison - Thanks for writing about Children's Congress. I am glad you were able to attend the Senate Hearing! I would love to learn more about your specific interests in the type 1 diabetes community (research news, events in your area).
ReplyDeleteBest,
Jill Lubarsky
JDRF Media Team
jlubarsky@jdrf.org