One reason Huntington's disease, and other so-called "orphan" genetic diseases began receiving attention was because Huntington's runs in folk singer Woody Guthrie's family. The author of "This Land is Your Land" and ballads about the Dust Bowl, Guthrie died from the illness in 1967 in Brooklyn State Hospital at age 55.
His wife, Marjorie, spent the next 16 years doing everything she could to raise awareness, and research dollars, to help Huntington's disease families.
When she started the Committee to Combat Huntington's Disease the year Guthrie died, it had seven members and they all lived in New York City. There was no organized research on the incurable illness, no known treatment, and no test to determine if a child of an affected parent would develop it. Doctors didn't know which gene carried the illness.
A Martha Graham dancer with no medical background, Marjorie Guthrie became an educator, advisor, publicist, consultant and role model. She served on federal and state 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 and the executive committee of the New York State Genetic Diseases Program. 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 more than $5 million.
Marjorie Guthrie died in 1983, at 65, of pancreatic cancer. That year, Congress, much as a result of the large and intensive lobby she created, adopted the Orphan Drug Act, which allocated research money to pharmaceutical companies to develop drugs to treat Huntington's and similar genetic illnesses.
Medical research, much of it conducted at the University of Rochester, escalated and continues to hold promise. A test for Huntington's was developed and the gene that carried it identified. The Committee to Combat Huntington's Disease merged with the Huntington's Disease Society of America and now has hundreds of thousands of members in the U.S. and through affiliate organizations, around the world.
The Upstate New York chapter is based in Rochester, but also serves the Syracuse and central New York areas and holds meetings and other events throughout the region.
One of the biggest Huntington's fund-raisers in the Northeast is the annual "Walk-A-Thon to Massacree Huntington's Disease," on May 22 at 9 a.m. at the Guthrie Center in Housatonic, Mass. The center is in the church that folk singer Arlo Guthrie - Woody and Marjorie's eldest son - made famous in his song "Alice's Restaurant Massacree" back in 1969. Guthrie, whose family organizes and participates in the walk each year, bought the church in the early 1990s.
The event brings together hundreds of familles for the six-mile trek to Stockbridge.
Staff writer Louise Hoffman Broach can be reached at 253-5311 ext. 238
or louise.hoffman@lee.net
When she started the Committee to Combat Huntington's Disease the year Guthrie died, it had seven members and they all lived in New York City. There was no organized research on the incurable illness, no known treatment, and no test to determine if a child of an affected parent would develop it. Doctors didn't know which gene carried the illness.
A Martha Graham dancer with no medical background, Marjorie Guthrie became an educator, advisor, publicist, consultant and role model. She served on federal and state 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 and the executive committee of the New York State Genetic Diseases Program. 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 more than $5 million.
Marjorie Guthrie died in 1983, at 65, of pancreatic cancer. That year, Congress, much as a result of the large and intensive lobby she created, adopted the Orphan Drug Act, which allocated research money to pharmaceutical companies to develop drugs to treat Huntington's and similar genetic illnesses.
Medical research, much of it conducted at the University of Rochester, escalated and continues to hold promise. A test for Huntington's was developed and the gene that carried it identified. The Committee to Combat Huntington's Disease merged with the Huntington's Disease Society of America and now has hundreds of thousands of members in the U.S. and through affiliate organizations, around the world.
The Upstate New York chapter is based in Rochester, but also serves the Syracuse and central New York areas and holds meetings and other events throughout the region.
One of the biggest Huntington's fund-raisers in the Northeast is the annual "Walk-A-Thon to Massacree Huntington's Disease," on May 22 at 9 a.m. at the Guthrie Center in Housatonic, Mass. The center is in the church that folk singer Arlo Guthrie - Woody and Marjorie's eldest son - made famous in his song "Alice's Restaurant Massacree" back in 1969. Guthrie, whose family organizes and participates in the walk each year, bought the church in the early 1990s.
The event brings together hundreds of familles for the six-mile trek to Stockbridge.
Staff writer Louise Hoffman Broach can be reached at 253-5311 ext. 238
or louise.hoffman@lee.net
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