Why do you advocate for Huntington’s disease?

I always knew I had to do something.  Small or large, it didn't matter. I remember thinking, "how could I expect someone to do something about this disease if I didn't have the courage to do something myself?"  I also promised my dad on the day he died that I would do whatever I could to raise awareness about HD and be an advocate for the HD community.

 

How did you start advocating?

The day my father found out he was HD positive was the day I found out I had a 50/50 chance of inheriting what has been described as one of the worst diseases known to mankind. My goal is to provide knowledge, awareness and help to preserve the dignity of individuals with HD and their families.  I share my personal experience with genetic testing in an inspiring new film, Alive and Well: a documentary about Huntington’s disease which will premiere at the Seattle International Film Festival on May 22nd and 23rd.  Click here to obtain more information and watch the trailer. 

 

What special perspective do you bring to advocacy and why is this perspective important?

As a Lead Vocational Rehabilitation Counselor my goal is to assist individuals with disabilities in their pursuit of employment. The lack of medical care for individuals with disabilities is frightening. Having the opportunity for someone like my father to apply for SSDI and have to wait to receive Medicare creates a financial burden not only for the patient, but the family and the community at large.

 

Why is the Huntington’s Disease Parity Act (H.R. 1015/S. 723) important to you?

I would like to see individuals with Huntington’s disease have access to health care immediately so they can benefit from medical treatment that may improve their quality of life. There is already too much fear with this disease. By supporting the Huntington’s Disease Parity Act, Members of Congress can measurably improve the quality of life for individuals impacted by HD and provide hope, security and independence to generations of families that need it the most. 

 

Why do you think it’s important for others to get involved?

 I feel that collectively as a group we need to end the silence, the secrets and the shame built around this disease. Generations of families never spoke about it until more recently. We need to advocate so we don't feel alone. Isolation promotes fear and we have to begin to talk to support one another. If individuals feel they have power and a voice then we will begin to break down the barriers caused by HD.

 

Get Involved! Go to www.hdsa.org/advocacy to learn more about HDSA’s advocacy efforts to improve the lives of people affected by HD.