July 27, 2007...5:17 pm
Taking our message to Washington, in comfy shoes
There is nothing more empowering, in my opinion, than walking the halls of Congress, bringing your message to the nation’s leaders. I’ve had the honor of doing that for the CdLS Foundation a handful of times over the past two years. During that time, I’ve figured out the Metro (the city’s subway system), mastered the Congressional buildings’ foot tunnels, and learned early on that high heels are a very bad choice when trekking across miles of marble floors.
Yesterday, I was in Washington, DC, again — this time on behalf of all people affected by genetic conditions. I was part of a group of more than 100 advocates participating in the second annual Genetics Day on the Hill, sponsored by the Genetic Alliance.
We were in Washington, DC, to talk about genetic discrimination and genetic testing standards. In addition to advancing federal policies to protect people with genetic conditions, the visits gave everyone the opportunity to raise awareness of the syndrome/disease they represented.
Armed with comfortable shoes and a lot of caffeine, I co-led a group of fellow New Englanders to meetings in 10 Senate offices. My group consisted of parents, patients and professionals representing Hermansky-Pudlak Syndrome, Parent Project Muscular Dystrophy, the Northeast support group for Velo-Cardio-Facial Syndrome, and the Rhode Island Dept. of Health. Our group shared plenty of enthusiasm, some laughter and even a few tears along the way.
I was humbled by the courage and passion of the people with whom I spent my day. I hope that the Congressional offices we visited were left with the same impression. –MM
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