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My family has suffered the devastating impact of HD for four generations. Yet until my mother was diagnosed, I had never even heard of the disease. Previous generations didn’t like to discuss it because there was a social stigma attached to anything that impaired a person’s mental capacity. My great-grandfather, despite being a successful businessman and wonderful family man was quietly put away in an institution. My mother recalled the shock of attending his funeral; she had been told he died before she was born. My grandmother was placed in a nursing home and died shortly thereafter from neglect, since no one at that facility had heard of the disease or knew how to care for an HD patient. When my mother became ill, she was pushed out of a number of long-term care facilities since they were not trained to care for her.
This is why I am an advocate; to raise awareness and insure that HD is understood and that all resources available are brought to bear on this terrible affliction. I believe in the power of advocacy—raising our voice to educate Congress and make our legislators aware of HD. We accomplished so much last year with the Compassionate Allowance (CAL) designation granted to HD and JHD by the Social Security Administration, but there is much more that remains to be done.
My goal for this year is to continue to advocate for greater public understanding of HD. I hope to get legislative support to provide HD families with access to Social Security Disability and Medicare. HD is not only emotionally devastating to families; it is also financially destructive as well. Any tool that may help support those who depend on an HD sufferer must be made available.
We continue to hope that someday a cure or even an effective treatment will be found. Until that day, I will advocate for greater help and understanding for those who battle this terrible disease and for their families. In my family, the HDSA has already made a difference. More than ever before, my brother can hope for better care than was available for previous members of our family. We still have much to do, but we are making progress.
You can get involved by advocating for the Huntington’s Disease Parity Act! Go to www.hdsa.org/takeaction to participate.