Living With HD
- HD Care
- HDSA Advocates in Action: Voices of HD
- Feedback Form
- HDSA Advocacy Video Contest (2012)
- Medicare Improvement Standard: JIMMO
- HDSA Comments on Proposed SSA Neurological Listings
- Community Services
- Annual Convention
- HDSA Forum
Why are you an HDSA Advocate?
My daughter in law's mother has Huntington's and my daughter in law carries the gene. My grandchildren may have it too.
How did you start advocating?
I contacted the Huntington's Association and looked for ways to help. In 2011, I contacted (then) Congressman Martin Heinrich about the Parity Act. A few weeks later, I heard that Congressman Heinrich agreed to cosponsor the legislation.
What makes the Huntington’s Disease Parity Act (H.R. 1015/S. 723) important to you?
I think it is a just law, and the use of the current outdated definition and waiting period are unfair to Americans affected with this terrible disease. I also want to raise awareness to encourage searches for ways to stop this disease.
What special perspective do you bring to advocacy, and why is this perspective important?
I am a mother in law and grandparent. I'm fairly active politically.
What is the most rewarding part about advocacy?
Working with the group of HDSA New Mexico Affiliate members and succeeding in getting our Senator Heinrich to cosponsor the Huntington’s Disease Parity Act. It is how our governmental system is supposed to work and it felt great to see the effect we the people can have.
Why do you think it’s important for others to get involved?
Because it is a terrible disease and we should do whatever we can to eliminate it and relieve both patients and caregiver pain!