Congress urged on Huntington’s
May 27, 2011 · Updated 1:38 PM
May is Huntington’s Disease Awareness Month, and I am writing to strongly urge U.S. Rep. Rick Larsen to cosponsor the Huntington’s Disease Parity Act (HR 718), and to urge my senators, Maria Cantwell and Patty Murray, to cosponsor the Senate companion (S648). If passed, the Huntington’s Disease Parity Act would make it easier for people with HD to receive Social Security Disability and Medicare benefits.
Huntington’s Disease (HD) is a hereditary, degenerative brain disorder for which there is, at present, no effective treatment or cure. HD slowly diminishes an individual’s ability to walk, talk and reason. Eventually, every person with HD becomes totally dependent upon others for his or her care. HD profoundly affects the lives of entire families -- emotionally, socially and economically.
I have a strong personal connection to HD. My son, whom we adopted at 2 days old, was diagnosed with Juvenile HD at the age of 19. In a week he will turn 27 and we have lived and experienced the effects of HD on all of our lives. It is a struggle for those showing signs of this disease to go through the Social Security Disability process, in addition to all of the difficulties they experience daily. I don’t want to see others have to endure the wait. We need to do something about it.
By cosponsoring the Huntington’s Disease Parity Act, members of Congress can show their support for not only for this family, but the nearly 1,000,000 Americans who are touched by this terrible disease.