New York, NY (September 18, 2017) — Music icon Woody Guthrie died from Huntington’s disease (HD) complications when he was only 55 years old, but before he passed his wife Marjorie promised him that she would dedicate her life to fighting this devastating disease that also threatened their children. On September 18, 1967 Marjorie Guthrie founded the Committee to Combat Huntington’s Disease, which is now known as the Huntington’s Disease Society of America (HDSA).
Fifty years ago, the organization started with just five families. Today, HDSA has grown into the world’s largest public nonprofit organization for HD. The mission of HDSA is to improve the lives of people affected by HD and their families. For its 50th Anniversary, HDSA will be celebrating the life and legacy of its founder, Marjorie Guthrie by highlighting her role as a caregiver, global advocate for families affected by HD and other rare diseases, and nonprofit pioneer.
“Marjorie Guthrie was a true pioneer for patient advocacy. Rather than accepting the lack of resources, support, understanding and science that families struggling with HD faced, she actively ‘did something’ and built the culture of care and hope that defines the Huntington’s Disease Society of America fifty years later ,” said Louise Vetter, HDSA’s President & CEO. “Because of Marjorie’s vision and the extraordinary volunteers who continue carry her legacy, HDSA enables the care, advocacy, education and science that is relentlessly fighting HD.”
To honor the work of the Society and Ms. Guthrie’s impact, HDSA is launching the “Notes of Hope” campaign. “Notes of Hope” pays homage to the countless personal notes that Marjorie sent to families affected by HD around the globe and encourages everyone touched by her work and HDSA to submit letters on postcards from their hometown showing the geographic reach and impact of HDSA.
The inspirational notes will showcase how HD has impacted their lives and provide an opportunity to thank Marjorie for her efforts. Folks are also welcome to submit copies of archival letters and photos with Marjorie Guthrie. The notes will be shared on social media, the HDSA.org website and be on display at the 2018 HDSA Convention in Los Angeles. Please mail postcards, letters and photos to: Huntington’s Disease Society of America, Attn: Notes of Hope, 505 Eighth Avenue, Suite 902, New York, New York, 10018. You can also submit scans of archival information to HDSAInfo@hdsa.org.
Since its establishment in 1967, today’s HDSA has provided millions of dollars of support for clinical care and science to improve the understanding and development of treatment for HD. Because of HDSA, families have access to a nationwide network of HDSA Centers of Excellence, more than 60 HD-specialized social workers, nearly 200 support groups for HD families, the HDSA youth support initiative the National Youth Alliance, telehealth and web-based resources, 24/7 access to educational information at HDSA.org and a comprehensive advocacy and research program.
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
Founded in 1967 by Marjorie Guthrie, 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.
The Society currently supports more than 50 volunteer-led Chapters & Affiliates, nearly 200 support groups & social workers, more than 40 HDSA Centers of Excellence and global HD research initiatives.
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.
For Immediate Release
Contact: Christopher Cosentino
Director of Marketing & Communications
Phone: (212) 242-1968 x229
Email: ccosentino@hdsa.org
