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The Society is a National, voluntary health organization dedicated to improving the lives of people with Huntington's disease and their families.
To promote and support research and medical efforts.
To assist people and families affected by Huntington's Disease to cope with the problems presented by the disease.
To educate the public and health professionals about Huntington's disease.
Huntington's disease (HD) is a devastating, hereditary, degenerative brain disorder that results in a loss of cognitive, behavioral and physical control, and for which there is presently no cure. HD slowly diminishes the affected individual's ability to walk, think, talk and reason. Symptoms usually appear in an individual between 30 and 50 years of age and progress over a 10 to 25 year period. Cases of juvenile HD have been diagnosed in children as young as two years of age. Eventually, a person with HD becomes totally dependent upon others for his or her care. More than 30,000 people in the United States are currently diagnosed with HD. Each of their siblings and children has a 50 percent risk of developing the disease, therefore 250,000 are at risk. Although medications can relieve some symptoms in certain individuals, research has yet to find a means of conquering or even slowing the deadly progression of HD.
The research being done on Huntington's Disease is at the forefront of genetic science. Recently, Dr. Francis Collins, Director of the National Institutes of Health, commemorated the 20th Anniversary of the discovery of the gene that causes HD. He spoke about how this landmark collaborative effort helped pave the way for the Human Genome Project. Twenty years later, HD research continues to provide valuable insights that are guiding the development of potential treatments for HD and many other genetic diseases.