This year the Huntington’s Disease Society of America (HDSA) Annual Convention was held in Boston MA. John and I flew to Boston and on Thursday I attended Leadership Day where leaders of chapters and affiliates meet and learn from the HDSA staff. I was able to attend since Amy Fedele, several other Huntington’s Disease (HD) advocates, and myself are organizing a HDSA San Francisco Bay Area Affiliate.
For the next two days, the attendees choose sessions that are of interest; i.e. Ask the Scientist….Anything, Bringing Kids into Your HD Family, Palliative Care, Catapult Your Volunteer Work in Your Community, Growing Up with HD and many other valuable topics.
On Saturday evening, a Gala is held to close the Convention and HDSA awards are given out by Louise Vetter, HDSA CEO and President, for many categories; Youth Award, Affiliate of the Year Award, Chapter of the Year Award, Marjorie Guthrie Award, Researcher of the Year Award and several others.
It was at this event, I received the surprise of my life. As I sat next to John and Denny Cone, the HDSA Pacific Region Development Manager, Louise said, “The Woody Guthrie Advocacy Award is being given to a a woman who in 1978 her college sweetheart and his three sisters, discovered their mother had Huntington’s Disease………. My eyes grew wide and I snapped my head toward Denny. All I remember after that is pushing my chair back, standing like a robot and walking toward the stage.
I’m honored to receive the award and I will continue to be a Huntington’s Disease Advocate until I have no breath in my body.
100% of the proceeds from Watching Their Dance is being donated to HDSA to help in the fight against HD. Since the book was published in April 2017, I have gifted over $14,000.00 to HDSA.