HD Advocates

The Woody Guthrie Advocacy Award

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.

HDSA 2019 Convention

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.

  

We Can Never Lose HOPE……………

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.

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