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By Matthew Santamaria (msantamaria@hdsa.org)

Before 1978, 22 year old Therese Crutcher was never the risk taker. During her senior year of college, she met her college sweetheart John Marin and wanted to start a life with him. You do anything for the people that you love and that is what Therese did.

In 1978, John and his three sisters found out that their mother had Huntington’s disease (HD). This is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.

Therese would then become a hospice professional and caregiver. She wanted to keep John’s family independent and have the highest quality of life that they possibly can. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

For more than 25 years, the Marin family would rely on HDSA for updates in HD research, medications, resources, etc. She is determined to have resources accessible and available to all HD families.

All three Marin sisters would pass away from complications associated with HD. Therese would then begin writing a non-fiction book called Watching Their Dance: Three Sisters, a Genetic Disease and Marrying Into a Family At Risk for Huntington’s. For information about the book, click here.

“Therese comes to realize that the uncertainty she willingly took on has opened her heart to love more deeply; that acknowledging her world could change overnight has made her life richer. She has learned to overlook shortcomings and to compromise, to let go of anger when she can’t control a situation, to find joy in the simple things,” according to HDSA. “Life is just too precious to waste a moment on small stuff. And though John’s sisters leave this world far too soon, the Marin siblings, she realizes, have taught her about embracing life, forgiveness, and unconditional love.”

The book can be described as an inspirational story of living in the shadow of HD, bringing more awareness, and honoring her three sisters-in-law. 100% of the profits from the book have been donated to HDSA. Since releasing the book in 2017, more than $14,000 have been donated to HDSA.

Therese is a board member for HDSA’s Northern California Chapter and also helps in the San Francisco area. In 2016, she and her daughter-in-law were participants for the 2016 HDSA New York City Marathon team and assisted in raising more than $8,000.

She has helped volunteer to lead the Outreach Committee in their social media efforts. On June 22nd of 2019, she will be volunteering at the Team Hope Walk 5K/10K in San Jose that will take place from 8:00 AM – 12:00 PM.

For more information about the event, click here.

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Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. 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 HD and their families.

​To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call 1(800)345-HDSA.

This is a story featuring a personal experience with Huntington’s disease. If you would like to have your story told please contact Matthew Santamaria at msantamaria@hdsa.org.