Fast Facts

If you don’t know about Huntington’s Disease, here are some facts to help you understand this devastating disease:

• One in every 10,000 Americans has HD and another 250,000 are at risk of inheriting the deadly gene. HD affects as many people as cystic fibrosis or ALS.
• HD is caused by a defective gene. HD is a degenerative brain disorder that slowly diminishes the affected individual’s ability to walk, talk, think and reason.
• HD affects men and women equally and crosses all ethnic and racial boundariesand has tremendous economic implications for the patient and families.
• Each child has a 50/50 chance of inheriting the deadly gene. Everyone who carries the defective gene will develop the disease.
• HD typically begins in mid-life between the ages of 30-45, although onset may occur as early as the age of 2. Early symptoms include depression, mood swings, forgetfulness, clumsiness, involuntary twitching and lack of coordination.
• As the disease progresses, concentration and short-term memory diminish and involuntary movements of the head, trunk and limbs increases. Walking, speaking, and swallowing abilities deteriorate.
• Eventually the person is unable to care for him/herself. Death follows from complications such as choking, infection or heart failure.
• At present there is no effective treatment or cure. However, HDSA-funded researchers have made significant strides in understanding the disease.
• HDSA was founded in 1967 by Marjorie Guthrie, widow of legendary folksinger Woody Guthrie, who succumbed to complications of HD at the age of 55.
• HDSA funds both basic and clinical research while providing education and support services to those affected by HD and their families.
• HDSA is doing its utmost to support research that will yield effective therapies and eventually a cure.