HDSA History

Woody Guthrie

"This Land Is Your Land" written and performed
by Woody Guthrie

Woody Guthrie was an American singer-songwriter and folk musician whose musical legacy includes hundreds of political, traditional and children's songs, ballads and improvised works. He frequently performed with the slogan "This Machine Kills Fascists" displayed on his guitar and his best-known song is the iconic "This Land Is Your Land”. Songwriters such as Bob Dylan, Phil Ochs, Bruce Springsteen, Robert Hunter, Harry Chapin, John Mellencamp, Pete Seeger, Andy Irvine, Joe Strummer, Billy Bragg, Jerry Garcia, Jay Farrar, Bob Weir, Jeff Tweedy, Bob Childers, Tom Paxton and many more have acknowledged Guthrie as a major influence. Folk musician Arlo Guthrie is one of Woody’s eight children.

 

Marjorie Guthrie

At left, Marjorie performs with the Martha
Graham Dance Company. At right, Marjorie
and daughter, Nora, during a dance class.

For twenty years, Marjorie danced with the New York-based Martha Graham Dance Company. She also taught at the neighborhood Playhouse School of the Theater, the Jewish Community Center of Essex County and the New Dance Group. In 1952, she started her own dance school, the Marjorie Mazia School of Dance.

Marjorie first met Woody Guthrie in 1942 and they were married the following year. Marjorie and Woody had four children, Cathy, Arlo, Joady and Nora. Cathy tragically died at age four in a fire.

Marjorie comforts her husband Woody as son Arlo looks on.

By the late 1940s, Guthrie's health was declining. He received various misdiagnoses, but in 1952, it was finally determined that he was suffering from Huntington's disease. During the more than 15 years that the disease affected him, Marjorie stood by his side as she supervised Woody’s hospital care and continued to seek the best medical assistance for him. She had even taught him to communicate by blinking his eyes after he had lost control of his other muscles.

Marjorie placed a small ad in a New York City newspaper and slowly gathered a determined handful of volunteers and HD families from across the United States. From that first moment, when Marjorie Guthrie reached out to other HD families, a worldwide movement began that would change the lives of those living with HD and bring hope to families. She 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.

Marjorie’s Crusade Against HD

Only a couple weeks later, on October 3, 1967, Woody Guthrie died from HD complications when he was just 55 years old. Before he died, Marjorie promised him that she would devote her life to finding answers. And for the rest of her life, from age 50 to age 65, she fulfilled that promise, never realizing the effects her life, her work and her impact would have on so many people worldwide.

Marjorie with Rep. Henry Waxman of California.

Marjorie traveled tirelessly around the world, speaking to Huntington’s families, medical students, congressional committees in Washington, and legislative assemblies in many states. “It’s a long way from the world of dance to the world of health care,” she said. “And yet, in another way, both depend primarily on communication.” Whenever she called for an appointment with a legislator, she introduced herself by asking, “How old are you?” Relying on the popularity of “This Land Is Your Land” and her son Arlo’s ballad “Alice’s Restaurant”, she would add: “If you are over thirty, I am Woody’s wife. If you are younger, I am Arlo’s mother.”

She served on both federal and state government panels, including the National Advisory Council of the National Institute of General Medical Science, New York Governor Hugh Carey’s Select Committee on Long Term Care, the State of New York Commission on Health Education and Illness Prevention, the executive committee of the New York State Genetic Diseases Program and the Board of Visitors of Helen Hayes Hospital. She chaired the United States Commission for the Control of Huntington’s Disease and its Consequences in 1976-77, out of which grew a federal research grant of over $5 million to establish two “Centers Without Walls”.

Marjorie addressing the 1980 CCHD Board.

Marjorie was one of the founders of the National Committee for Research in Neurological and Communicative Disorders (NCR), a coalition of health agencies and leading scientists whose primary purpose is to influence legislators to increase funding for the National Institute for Neurological and Communicative Disorders and Stroke. Her eloquent and always influential testimony supported various health concerns for the NCR. She served on the executive committee and chaired the Public and Governmental Information Committee.

She acted as consultant to numerous national and international voluntary health agencies. A grant from the Robert Wood Johnson Foundation sent Marjorie to 12 cities in the United States bringing voluntary health care agencies together to explore common concerns. Many of these groups have formed cooperative networks as result of these inspirational meetings. Her support and personal guidance were a valuable gift to Huntington’s disease organizations in Australia, Belgium, Britain, Canada, France, Italy Mexico, the Netherlands, New Zealand, South Africa, Spain and West Germany.

Marjorie assisted in the publication of two National Institute of Neurological and Communicative Diseases and Stroke publications, Huntington’s Disease: Hope Through Research and The Centennial Symposium on Huntington’s Chorea: Publication of Proceedings. She wrote a monograph, “A Personal View of Genetic Counseling” and several forewords to books about Huntington’s disease. She provided valuable input in numerous Woody Guthrie projects, including the film, Bound For Glory, and the books, Woody Guthrie Song Book and Woody Guthrie: A Life by Joe Klein.

 

 

Marjorie being congratulated
by President Jimmy Carter.

Marjorie was in the limelight of hundreds of medical conferences, media interviews and seminars. Her most famous lecture, “The Team Approach to Huntington’s Disease” was videotaped for educational purposes throughout the United States. Dynamic and compelling, Marjorie Guthrie convinced then President Jimmy Carter to form a Presidential Commission to study neurological diseases, including HD. The recommendations that resulted from that 1977 report have served as the cornerstone of HDSA's commitment to the care and cure of HD.

Marjorie Guthrie died just a few months before the genetic marker for HD was found in 1983. But in the 16 years that she worked to bring this disease out of the family closet, she brought empathy and hope — a hope for a future free of HD — to those affected by this devastating disease.

On November 4th 1983, CCHD became the Huntington’s Disease Society of America and a tribute to the vision and mission of Woody and Marjorie Guthrie. Moreover, it succeeded in bringing together a global community of HD families in mutual support and determination to defeat HD.

Marjorie Guthrie’s Philosophy

“There must be a strong, well supported National organization to assure the widest possible distribution of all our educational materials to the HD families, doctors, neurologists…to the whole scientific community and health professionals everywhere.

We must continue our search for HD families everywhere.

We must give active support to conferences dealing specifically with HD as well as related disciplines and disorders.

We must support and develop chapters in their local efforts and TOGETHER with National CCHD create the necessary financial resources to do the work that must be done.

We must begin a program, albeit limited at this time…to serve affected families wherever they may be….sometimes within the area of a chapter and when necessary beyond the capability of a chapter.

We must do everything possible to improve and expand our communications with our chapters…the public at large…..affected and non-affected families.

We must cooperate with existing health agencies and the federal, state and city government to improve the status of HEALTH and HEALTH PROGRAMS as a national priority.

All of these efforts must be done within the financial capability and responsibility of our membership.

Finally we must recognize that RESEARCH means many things. Any research in the areas of genetics and brain and central nervous system…however identified…may contribute ultimately towards a cure, control and early detection of HD.

To assist and help the implementation of this “philosophy”, we must secure and ensure the services of a professional executive who shall be responsible to our Executive Committee and/or Board of Trustees and to the “philosophy” expressed.”

LOVE & PEACE,

The Guthrie Legacy

In 1983, HDSA Coalition for the Cure investigator, Dr. James Gusella, found the very first marker for the disease and, after a ten year search that involved collaboration among the top HD researchers worldwide, the gene was located on the short arm of chromosome 4.

Since that time, research has progressed rapidly and, in 2004, HDSA formed a pipeline for drug discovery that begins in the laboratory with basic science (HDSA Grants & Fellows program and the prestigious HDSA Coalition for the Cure) progresses to applied/transitional research (HDSA partner CHDI) and then moves to patient's bedside in the form of human clinical trials that test the most promising compounds often at HDSA Centers of Excellence. Today the question our families ask is not "if" there will be a treatment or cure, but "when."

HDSA’s current research initiatives include the HD Human Biology Project, Berman-Topper HD Career Development Fellowship and the Donald A. King Summer Research Fellowship. These impactful programs aim to support meaningful HD research by funding patient-centric projects, supporting young investigators who are making HD research a part of their career plan, and introducing the next generation of doctors and researchers to the HD community.

In the area of care, HDSA has created a national network of resources and referrals that are unmatched by any other HD organization. HDSA Centers of Excellence provide medical and social services to those affected by HD and their families while a toll free helpline — 1-800-345-HDSA — and the HDSA.org web site help to provide access to services. HDSA Chapters, Affiliates, Regions, Social workers, and Support Groups work in tandem with the HDSA Centers of Excellence to increase awareness about HD and raise funds for research, education and family services. HDSA’s HD TrialFinder is a free, easy-to-use clinical trial matching service that connects individuals with Huntington’s disease, caregivers, healthy volunteers and physicians with current studies. The continuously updated database includes both interventional, observational and biomarker studies being conducted at clinical trial sites across North America.

Along her life’s path, Marjorie touched many and left a loving following. None will forget her strength and inspiration. “Love and Peace” became her trademark, as she ended all her letters and notes to people, from friends and acquaintances to international figures, with the reminder. The Huntington’s Disease Society of America is dedicated to completing the work that this courageous woman started.

 

Marjorie’s Impact

  • Ronald Reagan

    40th President of the United States (1981-1989)

    “Mrs. Guthrie’s vision in spurring interest in the search for the cause and cure for Huntington’s disease was rewarded by growth in research and an increase in public understanding of the disease.”

  • Dr. Francis Collins

    Director of the National Institutes of Health (NIH)

    “Fortunately for Woody Guthrie and for all of us, Marjorie, was by his side as he struggled with his failing health. Marjorie Guthrie responded to her husband’s death by founding what is now the Huntington’s Disease Society of America. Over the years, Marjorie raised our country’s awareness, not just of Huntington’s, but of all kinds of rare diseases. She made her case in Washington, DC — and right here in Bethesda, where she encouraged NIH to expand its efforts to understand rare diseases. Her foundation worked with NIH to support such research. And she was involved in the movement that eventually led to the passage of the Orphan Drug Act in 1983—the year she died. In its 30 year history, the Orphan Drug Act has greatly encouraged the development of drugs for rare diseases.”

  • Rep. Henry Waxman

    Former Member of the U.S. House of Representatives from California, 1975-2015

    “To me, Marjorie was a personal friend, a comrade in arms and an incomparable source of strength and compassion. The only appropriate tribute for Marjorie is an intensification of our efforts on behalf of the causes to which she was so single-mindedly devoted.”

  • Pete Seeger

    Folk Singer and Social Activist

    “Marjorie Guthrie could have retired to a life of ease, but she was the get-up-and-go kind. And you and I have got to get busy too, so Marjorie’s work and love will keep on going.

  • Helen Hayes

    Actress and Philanthropist "The First Lady of American Theatre"

    “A lot of beautiful music has come from the Guthries. But perhaps the most beautiful song was Marjorie Guthrie.

  • Samuel Baily

    Former HDSA Chairman

    “Before Marjorie came on the scene, Huntington’s families had nothing. No research, no support groups, no literature to explain what was happening to our loved ones and no one to fight for our needs. Most of us didn’t know there were others out there struggling with the same problems. Marjorie brought us together. She showed us how to help ourselves. She helped us understand our pain, and she spread the word about HD to others outside the movement.”

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