Lora, Marcia and Cindy Marin, my three (3) sisters-in-law, who died from Huntington’s disease (HD) complications, are never far from my thoughts.
I’m a HD advocate for many reasons and first and foremost it is because I want to honor these three (3) beautiful women whom I loved. John, my husband, and I miss them everyday and wish we all could have grown old together and celebrated many more Christmas’s, Thanksgiving’s and birthday’s.
Huntington’s disease, a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Parkinson’s, and Alzheimers at the same time. This disease has no cure and devastates families for generations. It’s an insidious disease because when a parent has the disease, every child has a 50/50 chance of inheriting the mutated HD gene that causes the disease. More about Huntington’s disease
I’m a volunteer for Huntington’s Disease Society of America (HDSA), a nonprofit dedicated to improving the lives of HD families. I’m currently the Chair for the HDSA San Francisco Bay Area Affiliate and I work with a fabulous team of HD advocates to heighten HD awareness and raise money to fund local services like HD support groups, the Centers of Excellence at Stanford University and University of California, San Francisco, HD Education Days and research. http://hdsa.org
Being involved has given me peace and soothed my soul by doing this important work in memory of Lora, Marcia and Cindy.
Benefits to volunteering: https://nonprofithub.org/featured/8-long-term-health-benefits-of-volunteering/
We Can Never Lose HOPE………………………..