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About Mrs. Therese Marie Crutcher-Marin
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Blog postThat’s how love works………That’s how love moves……..
Like a river running through you………lyrics from That’s How Love Moves by Faith Hill.
Once John wrapped his arms around me, I was never the same. He saw something in me that I never knew I had…………………. courage. Courage to love despite the enormous challenge that lay ahead in the years to come.
The challenge? Huntington’s disease (HD); the cruelest disease on the planet. A rare, fatal, genetic b -
Blog postAuthor Therese Crutcher-Marin
I believe that recognizing and embracing the little things in life every day is important to our happiness. I explain it in my nonfiction book.
Watching Their Dance: Excerpt from page 61, Chapter 7
John and I had just gotten married and back from the honeymoon and settling into our apartment in Roseville California.
“Anyone looking at us would have seen a happy, well-matched couple starting what seemed a wonderful life -
Blog postCrossroads symbolize an important decision that is unavoidable. The choice to continue the same way, which would be a straight path, no longer exists. Now the road divides into at least two paths. The traveler must choose one or remain stuck in place. psychologytoday.com-ways-get-yourself-unstuck
In my last blog, I wrote about the great pause, the crossroad, that I was confronted with; be with the love of my life, John Marin, or walk away forever. Living with an unknown gene sta -
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Blog postThe nonfiction book I published, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, begins with the following words:
“Some lives seem to move smoothly along a natural continuum, with one event or decision seeming to slide into the next. Such people seem to have faced no dramatic forks in the road, had few life-altering choices to make. Other lives, at least in hindsight, travel in a particular direction at one partic -
Blog postDuring the summer of 2017, John and I trekked across the Midwest in our RV for three months, to promote my just published book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.
I had spent a lot of time searching for Huntington’s Disease Society of America (HDSA) Team Hope Walks and HD support groups that I could attend on the trip. Once that was complete, we mapped out the trip.
Two other places that I wa -
Blog postAuthor Therese Crutcher-Marin
Huntington’s disease folks may not know about the following organization. They are another organization helping us move forward to find a therapy/cure.
Please watch the video from CHDI Foundation, Inc. CHDI is a United States based non-profit biomedical foundation that aims to “rapidly discover and develop drugs that delay or slow the progression of Huntington’s disease“,[4] a neurodegenerative genetic disorder that -
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Blog postI’m kicking off a series on HOPE with a positive video from Post Card from Palm Springs, “Highlights of the 2019 CHDI Therapeutics Conference” with Charles Sabine, Huntington’s Disease Advocate. Watch the video here:
At this time, the Huntington’s disease community is filled with HOPE because there are many promising clinical trials being conducted around the world. i.e. Roche RG6042 https://clinicaltrials.gov/ct2/show/NCT03842969, Uniqure AMT-130 https://en.hdbuzz.n -
Blog postIn 1983, Orphan Drug Act (ODA) was set up to encourage increased development of drugs for rare diseases. It was amended in 1984 to define rare diseases as those that affect less than 200,000 people in the United States, but it also included drugs for diseases affecting more than 200,000 people as long as there was no commercial viability—that is, that the cost of development and making available in the United States a drug for the disease would exceed revenue from the US sales. Huntington’s d
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Blog postAnother Sponsor at the Huntington’s Disease Society of America in Boston last June was Vaccinex, Inc.
Vaccinex and the Huntington Study Group (HSG) launched a trial for people with the gene mutation that causes HD who are either early in the progression of the disease or are not yet diagnosed with the disease.
SIGNAL, a Phase 2, multi-center, randomized, double-blind, placebo controlled study in subjects with early manifest and late prodromal Huntington’s disease (HD) t -
Blog post
Phyllis Marin
The following is a letter I received from Marjorie, Woody Guthrie’s wife in 1978 when my then fiance, John Marin and his three (3) sisters discovered the family secret; their mother, Phyllis Iva Cahoon Marin, had Huntington’s disease (HD). What is HD?
Marjorie and five other volunteers succeeded in forming the Committee to Combat Huntington’ s Disease(CCHD), which was incorporated in the state of New York on September 18, 1967, -
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Books By Mrs. Therese Marie Crutcher-Marin
Watching Their Dance: Three Sisters, A Genetic Disease and Marrying into a Family At Risk for Huntington's
Apr 25, 2017
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