Follow Up to Previous Post - HDSA Awareness Event on Saturday, September 3rd, Fleet Feet Menlo Park!
August 09, 2016
BENEFITING: Huntington's Disease Society of America, Inc.
EVENT DATE: Nov 06, 2016
My first interaction with Huntington's Disease was more than ten years ago when I met my husband, Keith, in a memoir writing class in college. My husband shared a story about his three aunts; Lora, Marcia, and Cindy and their struggle with the deadly disease. Keith also mentioned his father potentially carried the HD gene, but was unsure because he had never been tested. Little did I know at the time that Keith’s story would become my reality.
My second interaction with Huntington’s Disease was when I met Keith’s Aunt Cindy for the first time. She was in a care home, reclining in a La-Z-Boy chair, staring up at the ceiling. Keith gave her a kiss on the forehead and introduced me, but she was non-responsive. The disease had taken over her nervous system. It was only a matter of time until the disease claimed her life. Seeing Cindy was devastating and heartbreaking. She was frail and only a thin layer of skin and blankets covered the bones protruding from her body. I had heard stories of Cindy’s adventures; traveling to Africa, participating in protests at Cal-Berkeley, living in Canada, and taking Keith and his sister, Vanessa, on quests in their own backyard. It wasn’t fair.
I never had the pleasure of meeting Lora and Marcia. I knew the Marin women were special just from my brief interaction with Cindy and the times Keith’s Dad, John, would share their stories. For the past ten years, I have kept their stories tucked away in my heart along with the hope that Keith and I would never have to endure this deadly disease. Keith and I were married last August and had decided that Keith would be tested for the gene so we could choose whether or not to have children. John decided our fate when he opted to get tested in December of 2015. John tested NEGATIVE.
Vanessa, Keith’s sister, and I will be running in the NYC Marathon for the Huntington’s Disease Society of America team. I cannot wait to cross the finish line with her in honor of Lora, Marcia, and Cindy. I dedicate this race to their legacy, my husband, father and mother-in-law, and all of the people who have been affected by this disease.
The Huntington's Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with Huntington’s disease and their families.
HDSA's network of chapters, affiliates, HDSA Centers of Excellence, social workers and support groups provides a seamless connection for help, education and outreach to HD families and health care professionals across the United States.
All funds raised will help support HDSA's Mission of helping those affected by HD and their families.