I’m a Huntington’s disease (HD) advocate and currently serve as Chair for the new HDSA San Francisco Bay Area Affiliate. San Francisco Bay Area Affiliate
I’m also a blogger and the author of the nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family at Risk for Huntington’s, my inaugural book. It’s an inspirational love story while living with the uncertainty of my husband, John, inheriting the fatal brain disorder, Huntington’s disease, which has no cure. What is Huntington’s Disease?
My story is about the power of HOPE than the wages of Huntington’s. It may sound strange to most folks, but my marriage was actually fortified by its precariousness—I learned to love more deeply in the shadow of John’s mortality. Knowing that my world could change overnight taught me to live MINDFULLY each and every day and never take John, our life, our love for granted. Living with this huge uncertainty also taught me to FORGIVE, LOVE UNCONDITIONALLY and NOT SWEAT THE SMALL STUFF.
“A true story that is as uplifting as it is heartbreaking”. KirkusReviews
Through this experience I learned that, We Can Never Lose HOPE
As of May 7, 2020, John and I are donating 100% of the book purchase price to the nonprofit, Huntington’s Disease Society of America (HDSA). To date, John and I have donated over $15,000.00, the book profit, to help in the fight against Huntington’s disease. My Author Website, where you can purchase the book, is https://theresecrutchermarin.com