Honoring Marjorie Guthrie for Huntington's Disease Society of America (HDSA) Founder's Day
September 18, 1967 - 2026!
All contributions doubled today with a $40,000 match!
Marjorie Guthrie revolutionized the fight against Huntington’s disease (HD) with her grassroots approach, bringing together families, doctors, researchers, and lawmakers.
Following the 1967 death of her husband, folk music icon Woody Guthrie, she founded the Committee to Combat Huntington's Disease (CCHD) later renamed Huntington's Disease Society of America (HDSA). Armed with fierce determination, she traveled the country to unite isolated families, fund grassroots medical research, and passionately lobby Washington lawmakers. Her famous pitch to politicians tailored to their age—"If you are over 30, I am Woody's wife; if you are under, I am Arlo's mother" which helped to open doors that had previously been shut to rare disease advocates
Her fierce and relentless political activism fundamentally transformed federal health policy and scientific funding. She successfully convinced President Jimmy Carter to form a presidential commission to study neurological disorders and personally persuaded Senator Ted Kennedy to back pioneering HD research. Marjorie's vision extended beyond Huntington's disease; she co-founded the coalition that became the National Organization for Rare Disorders (NORD), laying the crucial groundwork for the landmark Orphan Drug Act of 1983. Her 16 years of unwavering advocacy catalyzed the global scientific community, directly leading to the discovery of the HD genetic marker just months after her death in 1983.
For more information, visit www.HDSA.org
 Woody and Marjorie Guthrie |
"With each passing year, I meet and talk with mothers and fathers, children and friends of affected families as I travel across the country, and I hear in their story’s remnants of my own. The team approach has been recognized as the best method for helping a patient and family through the various stages of the disease. Neurologists, family physicians, genetic counselors, social workers, nurses, and a variety of health therapists are working together, starting at the earliest symptoms, to offer better care and treatment. Now, we recognize that every member of the family is a patient whose needs must be assessed with each passing year. Huntington’s is a chronic disorder which requires a great variety of care.” – Marjorie Guthrie, Founder of the Committee to Combat Huntington’s Disease (later renamed to The Huntington’s Disease Society of America) |
 Nora Guthrie (Woody & Marjorie's daughter) |
"I hope you'll join our family in helping other families who are living with HD, and giving them the hope of a cure. My father once said, ""The note of hope is the only note that can help us or save us from falling to the bottom of the heap of evolution, because, largely, about all a human being is, anyway, is just a hoping machine." And HDSA is one great, big hoping machine!" – Nora Guthrie |
 Anna Canoni (Woody & Marjorie's granddaughter) |
"I am so proud to be a part of the organization my grandmother Marjorie started almost six decades ago. She believed in that everyone could do something to move the needle forward. We can all participate in some way, advocacy, awareness, fundraising, community building, taking care of loved ones…there’s always a way to help when it comes to Huntington’s. We are one big family! The HD community is the fiercest, toughest, strongest, most determined, empathetic, understanding, enduring, and loving community of people I have ever known. I love this organization and these families with all of my heart! The progress in the HD community that has taken place in just six decades is astonishing! We went from there being no help known to hope for everyone. That’s the dream that my grandmother Marjorie wanted…the dream of hope and help for all." - Anna Canoni |
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