Camryn is in the back row, against the wall, behind Mr. Obama's left shoulder (with the pink head band).We just returned from our trip to Washington, DC. Camryn was a delegate to the JDRF Children's Congress. 1500 applications were submitted and 150 children were chosen to represent each of the 50 states. Along with a handful of International delegates. The job of these delegates was to bring a very specific message to members of the House and Senate: The need for Health Care Reform and the need to renew the Special Diabetes Program in 2010.
The kids sat in on training sessions where they learned about important research being done at the National Institute of Health, funded by JDRF and the Special Diabetes Program. They also learned how the funding which has helped in the development of their insulin pumps, continuous glucose monitors and other life saving devices is in danger of being slashed by 35% if the program is not funded in 2010. The message was not lost even on the tiniest delegates as every one of them depends on insulin. It was a hard message to swallow as these kids were told that insulin is not a cure, but rather a life line. They also understood the importance of health care reform as many of the kids in the room are not currently using continuous glucose monitors (CGMs) due to lack of insurance coverage - can you imagine that most insurance companies refer to this as a "luxury item"? As if anything having to do with diabetes is a "luxury".
Before going to Washington so much of what we hear about laws, bills, research funding, etc. seemed distant and not so related to everyday life. But when we walked through the halls of the congressional office building every child and every parent knew exactly how these things impact diabetic children every day. One girl in our group told her story about how her insurance company would not cover enough test strips for her to test her blood sugar as many times a day as she needs to. Yet they will cover her admittance to the hospital to treat diabetic complications. We all know that we'd rather test blood sugar more to avoid kidney failure and retinopathy - and we certainly know which is more taxing on the medical system. One clear message is that our medical system is broken is needs fixing ASAP.
It was 10 years ago that a little 8 year old boy, named Tommy Solo, came up with the idea that kids should go to Washington to tell their story and ask for help from Congress. How right Tommy was. And how brave and brilliant these children are!!
The big surprise of the week was that just the night before the start of Children's Congress they got the call from the Whitehouse with clearance for a visit with President Obama. No parents were invited, kids only. The kids had a few minutes to shake hands with the President and thank him for his support of Stem Cell research - critical in finding a way to regenerate insulin producing cells in the pancreas. This has gotten the wheels moving on research that has been stalled for the past 8 years. Research that will cure this disease!!
There were a lot of super stars on this trip, Mary Tyler Moore, Sugar Ray Leonard, Nick Jonas, Jared Allen, just to name a few. They were all sharing the same message with the President and members of Congress. But despite all the great pictures and glitz and glamour, this was a working trip. And Camryn was busy doing the same work as Nick Jonas, prowling the halls of Congress, telling her story and asking for help. She knows that we've taken the message to the very top. And none of us will rest until this awful disease is cured!!
We can't rely on Congress to do this work alone and continue to do our part, like families all over the world, to raise money through JDRF. Last year JDRF contributed $150 million towards research!! This money is raised through walk-a-thon donations, bake sales, yard sales, car washes, etc. Kids and parents continually asking everyone they know and don't know to help us in our fight against this disease. A cure is within reach, closer than ever . . . and so we asking yet again: please help us in anyway that you can. Even a donation of a dollar, or $5 contributes. Or join a walk team and help fund raise.
Our next event is the Ride for a Cure in Killington, VT with a fundraising goal of $5,000
And after that we will be at the Western Massachusetts walk for a cure with a fund raising goal of $10,000.
So, it is a great honor to meet the President of the United States and a lot of fun to shake hands with Nick Jonas - but a cure for type 1 diabetes = PRICELESS!!
No comments:
Post a Comment