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
- NYA Capitol Hill Takeover 2.0
- Eating Congress for Lunch
- Community Services
- Annual Convention
Why are you an HDSA Advocate?
I am at risk for Huntington’s disease. My mother’s fight with HD ended in February of 2012. It has taken a drastic toll on my immediate families dynamic and I know that there are other families that are dealing with this same monster. I have decided to make this my mission to make others know about HD and help advocate for others who fight against HD.
How did you start advocating?
I started advocating this past year. I was always fearful of HD, because all I ever knew about it was the fact that my mother was diagnosed and that I could suffer the same fate. I started to shadow Dr. Peggy Nopoulos at the University of Iowa in her clinics and began to see that there are others who are affected the same way. I was approached by Shawna Feely (Genetic Counselor at university of Iowa) about starting an at-risk for HD support group and have been campaigning very hard for that.
What special perspective do you bring to advocacy and why is this perspective important?
I am a person who is at risk and a professional that works with people with HD. I understand what HD can do to not only a loved one but can drastically effect the care giver as well. HD is not a single person disease; it is a disease that torments families and generations.
What is the most rewarding part about advocacy?
You are in the fight against HD. This is a disease that will not be defeated by one person, there is strength in numbers.
Why is the Huntington’s Disease Parity Act (H.R. 1015/S. 723) important to you?
I have seen several newly diagnosed individuals that have this high level of uncertainty of how they are going to support themselves financially. This disease destroys bank accounts because of the level of care required for people who have this disease. Families go into the HD clinics and go from two incomes to one in a single day. This act will at least help ease this pain and make life a little easier for those dealing with this disease.
Why do you think it’s important for others to get involved?
The community of HD people is a small one in comparison to cancer and HIV. Just because it’s a smaller population does not diminish the fact that it’s important. The HD community is unbelievably supportive; to branch out even further will strengthen the effort.