HD Awareness

May is Huntington’s Disease Awareness Month

Tomorrow is MAY 1st, and the Huntington’s disease (HD) community kicks off a month of heightening awareness for this rare, genetic disease, which most people know nothing about.   http://hdsa.org/what-is-hd/ 

When I begin a conversation with someone about HD, I ask, “Do you know who Woody Guthrie is?”  If they say, “No”, I respond, “He’s a singer-songwriter, one of the most significant figures in American folk music who wrote the song, This Land is Your Land and he died of Huntington’s disease.   http://www.woodyguthrie.org/biography/biography1.htm    

Marjorie Guthrie, his wife, made him the HD poster child, after his death, for the organization she started,  “The Committee to Combat Huntington’s Disease” which evolved into Huntington’s Disease Society of America (HDSA) after her death in 1983.  http://www.hdsa.org   

History of HDSA   http://hdsa.org/about-hdsa/hdsa-history/             

What is Huntington’s disease?  I describe it to people as the cruelest disease on the planet because:

#1-it’s hereditary, so it can devastate families for generations;

#2-it is like having ALS, Parkinson’s & Alzheimers, with all their symptoms, at one time;

#3-there is no cure;

#4-there is no therapy;

#5-it’s progressive and people can struggle with it for 10-20 years;

#6-there is adult HD and Juvenile Huntington’s Disease (JHD);

#7-it can financially devastate a family because of the endless years of caregiving for a loved one.  

Today there are many organizations advocating for the disease and many researchers and scientists working toward a cure.  A few of them are:

Huntington’s Disease Society of America http://www.hdsa.org

Help4HD International  https://help4hd.org/

Hereditary Disease Foundation   http://www.hdfoundation.org/ 

Huntington’s Disease Foundation  http://www.huntingtonsdiseasefoundation.org/ 

WeHaveAFace  https://www.wehaveaface.org/

  

Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

100% of the proceeds from Therese’s book sold in the U.S. will be donated to HDSA.  http://www.hdsa.org     Therese and John donated $9,015.00 to HDSA that is the profit from book sales since Therese published in April 2017.

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