Huntington’s disease is a hereditary, degenerative brain disorder for which there is no effective treatment or cure. It slowly diminishes an individual’s ability to walk, talk and reason. Eventually, everyone with the disease becomes totally dependent upon others. Huntington’s disease profoundly affects the lives of entire families — emotionally, socially and economically.
My Tony, a son, a husband and a father, was once an active part of society. Now he’s trapped in his own body by a debilitating disease called Huntington’s Chorea. He is unable to speak, dress, walk, go to the bathroom or eat.
Now imagine his family, helpless against a disease that lies in wait for its next victim. Unable to care full-time for their loved one and totally reliant on a nursing facility to care for their son, husband and father. Our family has endured this for a father and unfortunately two sons. There may be others to come, and we pray daily for that not to happen.
Funding cannot be cut to these people. They are humans, and yet in many cases our inmates get better care in penal institutions. I know because I worked for the Department of Corrections for five years.
I strongly urge my representative and senators to co-sponsor the Huntington’s Disease Parity Act of 2013, which would make it easier for people with the disease to receive Social Security disability and Medicare benefits.
Please ask everyone you know to encourage Congress members to sponsor this bill. You can find more information at www.hdsa.org/takeaction.
By co-sponsoring the Huntington’s Disease Parity Act, members of Congress can show their support for not only this family, but the nearly 1 million Americans who are touched by this terrible disease.