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I’m Therese Crutcher-Marin and on this website I share information on Huntington’s Disease (HD) and blog two (2) times a week on clinical research being conducted, services available to HD families, how HD affected my family and much more. Please see the tab on my website, What is Huntington’s Disease to learn more about the Cruelest Disease on the Planet.
HD is a rare, fatal, genetic brain disorder that has symptoms of ALS, Parkinson’s and Alzheimer’s at the same time and it strikes young. About 10% of all cases are children with Juvenile HD. When a parent has the disease, each child has a 50/50 chance of inheriting the mutated gene and developing the disease. There is NO CURE.
41,000 Americans are symptomatic and approximately 200,000 live at risk. There is a genetic test to find out whether you have the mutated huntingtin gene, but very few people get tested.
Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. It is a love story while living in the shadow of Huntington’s disease. I wrote my story to honor my three (3) sisters-in-law, Lora, Marcia and Cindy who died of HD complications, to heighten HD awareness and to fundraiser giving all the proceeds from book sales to the nonprofit, Huntington’s Disease Society of America (HDSA).
Fortunately, John, my husband, genetically tested anonymously at the HDSA Center of Excellence at UC Davis Medical Center in Sacramento and his test was negative. We are forever grateful for this gift to our children.
We Can Never Lose HOPE……