JDRF Children's Congress: Type 1 Diabetes Advocates Seek Change

Beth McNamara Health Guide
  • Few things are as compelling as a story of a child who is overcoming adversity to survive and even succeed in life, whether this adversity be poverty, violence, a broken home, or disease. When we hear these stories told in person, we become more passionate, more motivated to help in any way we can.


    The young advocates representing the JDRF's Children's Congress 2009 do just this. They tell their stories of living with Type 1 and their dreams for a cure to lawmakers in the Nation's capitol to help motivate these legislators to fund additional research.  It is these stories, intertwined with passion and hope, that serve as the empowering force for the Children's Congress and its delegates.

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    The advocates are all under the age of 18, and most cannot drive (some cannot even reach the gas pedal of a car!), sign up for a credit card, or vote. Yet they will do what many adults could not imagine doing during our lifetimes: come to meet with members of Congress in order to educate and persuade these legislators to fund and support their cause. They will do so by sharing their stories and experiences about Type 1 Diabetes in order to better educate these legislators about why a cure is so critical.


    This year's Congress will be June 22 to June 24, in Washington, DC. One hundred and fifty children, all with Type 1 Diabetes, comprise the Children's Congress. The delegates range in age from 4 to 17 and represent all 50 states plus the District of Columbia as well as five honorary delegates who hail from the United Kingdom, Greece, Denmark, Canada, and Australia.


    The event began a decade ago and was inspired by an eight-year-old boy from Massachusetts, Tommy Solo. A Type 1 Diabetic, Tommy had been listening to his mother and some other parents discussing their plans of going to Washington, DC to advocate for more monies to fund research. According to the JDRF site, Tommy interrupted this discussion, asking, "Why should you adults go to Congress to ask for funding? Kids with diabetes should go and tell them what it's like, because we know better than anyone. Maybe then, they'll hurry up and help us find a cure." And so he did, and the Children's Congress was born.


    The event is held every two years, with the next scheduled for 2011. Coupling grass roots efforts and media coverage, The Children's Congress has been growing each year since its inception. In 2007 alone, the event was covered on over 50 news broadcasts and picked up by 250 newspapers and magazine. It is the biggest of its kind dedicated to finding a cure for Type 1 Diabetes.


    Mary Tyler Moore, a long-time diabetic and the JDRF International Chairman, will lead the young delegates during the event. According to Moore's letter on the JDRF site, the delegates will "blitz the Hill with meetings with Congressmen and women, educating them on Type 1 and its complications and asking help with funding research for a cure at the NIH (National Institutes of Health).  


    More than 1,500 children applied to be a delegate with the Children's Congress 2009. According to Cynthia Ford, Chair of this year's Congress, "Choosing the 150 delegates from the pool of over 1,500 applicants for this Children's Congress was a difficult process and a challenge," said Ford. "Truly, all 1,500 who applied would have served this role well." The JDRF pays for all 150 delegates, plus one parent each, to travel to Washington, DC, and attend the event. Children only can serve once in a lifetime.


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    By and large, people are not aware of the tight control required of Type 1s to manage their condition, or of the long-term affects that Type 1 could have on their physical health and often their financial health and the impact that Type 1 has on the healthcare system, which can account for about $174 annual care costs.


    For every one advocate living with Type 1 Diabetes that speaks on Capitol Hill, there are thousands that stand behind him. Each of these diabetics deserves the hope that we will soon find a cure. Technological advances like the artificial pancreas and Smart Insulin puts this dream within our grasp. Likewise, the achievements of those living Type 1, whether it be the nomination of Sotamayor to the highest court or the athletic achievements of Team Type 1 winning the Race Across America for two years, compel the general public to take notice and hopefully help to find a cure.  It would save those afflicted so much effort, energy and the Nation so much in healthcare costs.


    If you'd like to find out more about the Children's Congress, you can do so from the JDRF site, where you can check out who is an advocate from your area, share pictures on Flickr, and read postings on the blog. If you are interested in being a delegate for the 2011 Congress, you can sign up to receive an application when they are available in 2010.


    May those on the Hill be all ears next week for the smallest lobbyists with the biggest voices.


Published On: June 17, 2009