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
- Community Services
- Annual Convention
Why are you an HDSA Advocate?
I lost my dad to Huntington’s disease in 2008. I stood by and watched him suffer and felt an enormous sense of helplessness as the disease progressed through the years. Advocating for HD is my way of honoring my father, but I also believe in some ways it is helping me to heal and gain a new sense of hope for a better tomorrow for all those living with HD and those like myself who are living at-risk.
How did you start advocating?
I logged on to HDSA.org one day wanting to know if there had been any advances in treatments for HD and I came across the advocacy page. It was there that I learned about the Parity Act and the need for people like me to reach out to our congressmen and women. I jumped at that opportunity because my dad suffered without insurance and without a doctor while we waited for his benefits to kick in. I immediately enlisted the help of my family and friends by forwarding links to the page and asking that they also reach out. Last year I went to a town hall meeting where Tim Griffin was speaking during the last election year and personally asked him to sponsor the Parity Act. And today, I still forward links to my family and friends shamelessly begging that they reach out again and again.
What special perspective do you bring to advocacy, and why is this perspective important?
I am one of the 250,000 people in America living at-risk of inheriting this disease. I have been through the depths of despair and hopelessness as my family struggled to care for my father. I have lived in fear most of my adult life of this disease and the what-if’s associated with it, but through that and because of that I am a better person. I love harder and I fighter hard for what I believe in. My perspective is important because I understand what it is like to lose a loved one and to live at-risk.
What is the biggest challenge you’ve had with advocacy, and how did you resolve it?
Fear. I have trouble collecting my thoughts because this is such an emotional topic for me. I have shed a lot of tears and worried if I have said enough or too much in an email or done enough and I still battle with that today, but I do it with a little more ease each time. The biggest thing for me is a little self-talk, I often repeat to myself “you can do this” and yes, I repeated that a few times while answering these questions.
Why do you think it’s important for others to get involved?
My hope is that I will inspire someone reading this to contact their member of Congress. I did not realize that an email or a visit could make a difference, but it can! And although I will never feel like I have done enough, I know that if we all just send one email or make one phone call or visit one congressman that together our voices will be heard.
What are your advocacy goals for 2013?
To help get the Parity Act passed so people like my father will have the benefits they need, when they need them the most.