Reflections

The past few days at Children’s Congress 2011 are hard to describe, but in a good way. The following blog is longer than usual, but I feel there are many memories that deserve acknowledgement. These words come to mind when thinking about my experiences and the people I have met. Inspiration. Promise. Camaraderie. Unity. Amazing. Hope for a cure.

From meeting celebrities like Olympic gold medalist Gary Hall Jr. and Supreme Court Justice Sonia Sotomayor to attending a Senate hearing about type 1 diabetes research, Children’s Congress exceeded my expectations. I came into this event with an open mind, so I would not be disappointed . But after being together with so many fellow diabetics and delegates, and their families, I can truly say this week has been one of the most rewarding, promising, and inspirational ever.

Justice Sotomayor answered our questions as a friend and fellow diabetic. I never knew her childhood was so hard. Back then, diabetics had to deal with the disease in a very different manner than how diabetics today deal with their disease. Now type 1 diabetics have insulin pumps and glucose meters which read sugars in five seconds, but Justice Sotomayor explained how she had to boil her glass syringe for thirty minutes, test her blood sugar through an inaccurate and cumbersome process, and essentially deal with a world that did not know much about diabetes.

The “Diabetes Role Models” town hall meeting featured several diabetic celebrities, including Amazing Race winner Dr. Nat Strand, Olympic Gold medalist Gary Hall Jr., JDRF’s Chief Research Officer Dr. Aaron Kowalski, Superbowl champion Kendall Simmons, and LPGA golfer Carling Coffing. All explained how type 1 diabetics, despite the constant challenges, can pursue remarkable lives. One interesting question came from a fellow delegate who asked Dr. Nat Strand how diabetes affected her performance during the Amazing Race. She explained the hardest part was counting carbs, an essential part of living with diabetes, as she constantly encountered so many exotic foods.

The song performance with Crystal Bowersox showed how hundreds of voices can come together as one, and strongly advocate for a cause. I believe this song shows how powerful an advocacy group JDRF is. What an opportunity to sing about one’s life with diabetes right in front of the Capitol!

The crowning moment of my whole experience came when my Missouri delegation met with Sen. Roy Blunt. His office offered us water and snacks, which were all great on such a hot and muggy Washington day. My fellow Missouri delegate, Jed Rellihan, and I began the meeting with Senator Blunt’s aide. We also were accompanied by two international delegates from the Netherlands and Denmark. Then the Senator came flying in and graciously gave us his time.

He explained to us how his office was once occupied by President Harry Truman. He signed a photo and asked questions about diabetes. I was really surprised by how knowledgeable the Senator was regarding type 1 diabetes. After we asked him to urge the FDA to expedite the artificial pancreas project, he proudly said, “I’m on it.” That powerful quote inspired confidence and pride in what we, Jed and I, were doing that day. He has our vote. I cannot explain how grateful I am to the Senator and Congress as a whole for supporting type 1 diabetes research. Because of their support, type 1 diabetics can see a cure on the horizon.

At the end of the day, my family and I met with Illinois Congressman Jerry Costello, who earns an A+ when it comes to support for type 1 diabetes research. He gladly showed me his office, which had a beautiful window overlooking the Capitol building. His aides, including Shay, Orlando, and Karl, all were extremely accommodating and engaging. The state of Illinois and all type 1 diabetic children have an incredible representative in Congressman Costello. In fact, if there is a man who I would want to model as a member of Congress, it would be him.

Despite having a scheduled meeting with Sen. Claire McCaskill, she did not meet with our Missouri delegation, including two international delegates and JDRF’s professional photographer. Even though he and Sen. McCaskill signed the letter to the FDA, Congressman Todd Akin declined to meet with us. Thank you Sen. Blunt and Congressman Costello!

The senate hearing chaired by senators Joseph Lieberman and Susan Collins (with senators Jeanne Shaheen, Daniel Akaka, Sherrod Brown, Mark Pryor, and Frank Lautenberg) of the Senate Committee on Homeland Security and Governmental Affairs went really well. One panel included movie superstar Kevin Kline, who explained the burden type 1 diabetes has not only on children but also parents. Representatives from the FDA and the NIH detailed their efforts to move the artificial pancreas into outpatient trials.  They took some heated questions from the senators, who conveyed our frustrations with the artificial pancreas approval delays. Another panel featured several delegates who talked about their lives with type 1 diabetes. I must say that both panels were great and very informative!

Overall, I have learned several things at Children’s Congress 2011. The people, the JDRF staff and volunteers, and the families show how strong friendships and memories can be made over a period of only three days. Meeting with Sen. Blunt, Congressman Costello, Justice Sotomayor and the “Diabetes Role Model” town hall panel proved to me that type 1 diabetics can go anywhere, even to the highest court in the land or the most powerful governing body in the world.

Most importantly, I learned that because of our efforts, the FDA plans to publish draft guidance for the artificial pancreas project by December of this year. However, the outpatient trials could be prolonged for several years. It is pivotal for us to keep urging the FDA and Congress to move forward with the artificial pancreas. Our lives depend on it.

Due to everyone involved in Children’s Congress 2011, I believe we are closer to the day when I can say, “I had type 1 diabetes!”