Huntington's Disease Society of America
In 2010, after being asked by someone dear to me if I would try to get the Maine Senators to sponsor the Parity Act, I began my journey with HDSA. Because silence had pervaded my HD experience, this was all new to me. My dear friend knew I was from an HD family, and I soon found out that he had just been diagnosed. This sprang me into action and set me free from the cage of silence I had lived in for so many years.
Since then, I have made four visits the offices of my senators, including one to Senator Collins herself. Each time I am more and more motivated to keep trying for the bill. A total of six other Mainers have gone with me on these visits.
My friend also asked me to cheer on Marie Nemec and Charlotte Reichs for their 2010 Bike for the Cure from Maine to Raleigh. I hosted them and raised $1000 with a kick-off ride for them.
That fall I attended the New England Conference and entered the world of HDSA. At my first national convention the next June, I realized I had been on a journey to this destination my whole life and had finally arrived. The black curtain of HD became a veil I could see through to hope on the other side for families everywhere.
I started a support group in 2011, and in just a year there are 25 people connected to it. From this wonderful group I now have four affiliate members to share the load of HDSA work in Maine.
Last summer I organized a conference for the Passamaquoddy Tribe at Pleasant Point. Experts from all over New England presented to this remote community which has about 50 people with HD.
In the fall we had our first ever Team Hope Walk, Run, Bike in my town, Ellsworth. We raised almost $12,000, had 18 sponsors, and about 100 participants, a fifth of whom were part of HD families.
For two years I have been in the PREDICT study in Atlanta as a member of the control group, having tested gene-negative. My daughter is my study partner. It is empowering to be a part of this. I am doing Diplomat training now.
I have organized a presentation by Jimmy Pollard for this May at Acadia Hospital in Bangor - "What it might be like to think with HD". I am also be doing an educational session with the staff at a long-term care facility in Orono.
Not knowing a soul with HD in my area I had to start from scratch as the Affiliate Chair. Even though I spent hundreds of hours working alone on these projects, the families were always in my mind and kept me going. Now that the support group has grown, I am not by myself in doing this important work. It has made a huge difference to me on a personal level, and I know it has mattered to many others.
|Share this story on Facebook|