New York, NY – Music icon Woody Guthrie wrote “She Came Along To Me” for his wife Marjorie before he died from Huntington’s disease (HD) in 1967. Before he passed, Marjorie promised Woody that she would dedicate her life to “do something” about this devastating brain disorder with no cure which also threatened their children. This inspiring crusade against HD forced Marjorie to retire from her career as a professional dancer with the Martha Graham Dance Company and she founded the Committee to Combat Huntington’s Disease which would later become the Huntington’s Disease Society of America (HDSA). That was 50 years ago, but at HDSA the Guthrie Family legacy lives on to this day.
On October 25th HDSA paid tribute to Marjorie and celebrated the release of the Woody Guthrie Tribute Concerts Box Set (Bear Family Records) which were the organization’s first major fundraising events in 1968 and 1970. The concerts featured music legends such as Bob Dylan, Joan Baez, Pete Seeger and many more.
“Reflecting on Marjorie’s impact is as astounding as it is inspiring,” said HDSA’s President & CEO Louise Vetter. “At a time when communication was by mail and travel was limited, she armed herself with a typewriter and suitcase and the needs of countless families on her shoulders. Powerfully and personally, she paved the way for a new brand of patient advocacy and integrated families into medicine and science like never before. Marjorie created a community driven to create immediate change against a merciless foe.”
The event was held just blocks from where Marjorie lived at The Triad Theater in New York City and included presentations from Woody and Marjorie’s daughter Nora and granddaughter Anna Canoni. World-renowned soloist Charlotte Landreau from the Martha Graham Dance Company delivered a beautiful performance of the “Bride Solo” from Appalachian Spring.
Dr. Michael Hayden from Teva Pharmaceuticals gave heartfelt speech describing how Marjorie convinced Senator Ted Kennedy to support Dr. Hayden’s HD research in the US.
The second half of the event featured wonderful live music performances from Woody and Marjorie Guthrie’s grandson Cole Quest, Coyote & Crow, Jackson Pines, The Mammals and Glee cast member Noah Guthrie. The night concluded with an incredible rendition of “This Land Is Your Land” featuring all the performers.
The night was sponsored by Wave Life Sciences, Teva Pharmaceuticals and Asclephius Healthcare Resource.
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 during their prime working years and has no cure. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes HD. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of HD are described as having, ALS, Parkinson’s and Alzheimer’s – simultaneously.
About the Huntington’s Disease Society of America
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, 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 (800) 345-HDSA.
Media Contact: Christopher Cosentino
Director of Marketing & Communications
Phone: (212) 242-1968 x229
Photos by Hoon Sohn:
Left to Right: Anna Canoni, Nora Guthrie, Louise Vetter & Nancy Wexler
Below Dr. Michael Hayden