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, as a nonprofit voluntary health agency. To read about Marjorie, go to https://hdsa.org/about-hdsa/hdsa-history/ The CCHD, later evolved into the nonprofit, HDSA, after her death in 1983. http://www.hdsa.org
I wanted to answer your letter to us personally because I really do appreciate your thoughts and the fact that you are not deserting your young man and are looking for ways to HELP! That is a wonderful attitude….and I am sending you a packet of information about CCHD and the work we are doing.
I hope that after you read all this you might be “inspired” to JOIN WITH US….and perhaps in time….you might event help us build a chapter in your area. The closest to you is in San Francisco. But…for now…read…and learn what is going on and when you can…get involved.
We need FRIENDS! No one asks the cancer patients to go out and help…and we must realize that most of the HD families who are burdened with the problems of HD can not do all that must be done! We look for friends, relatives, people who really care and you just might be one of those! I will be anxious to hear from you…..Until then….
LOVE & PEACE! In the NEW YEAR!
Signature of Marjorie Guthrie
We Can Never Lose HOPE…………
Therese at the 2018 HDSA Annual Convention in LA.
I became an HD Advocate the day I decided to marry John. I wrote the nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s to help in the fight against HD.
100% of the profits from the book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). My author website is: https://www.theresecrutchermarin.com