Huntington’s Disease

Huntington's disease (HD) is a brain disease that is passed down in families from generation to generation. It is caused by a mistake in the DNA instructions that build our bodies and keep them running…HD causes deterioration in a person's physical, mental, and emotional abilities, usually during their prime working years, and currently has no cure. Most people start developing symptoms during adulthood, between the ages of 30 to 50, but HD can also occur in children and young adults (known as juvenile HD or JHD). HD is known as a family disease because every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.

  • Hereditary Disease Foundation
  • Huntington's Disease Society of America is dedicated to improving the lives of everyone affected by Huntington's Disease. Founded in 1968 by Marjorie Guthrie, wife of folk legend Woody Guthrie who lost his battle with HD, the Society works tirelessly to provide the family services, education, advocacy and research to provide help for today, hope for tomorrow to the more than 30,000 people diagnosed with HD and the 200,000 at-risk in the United States.
  • HD Lighthouse of the Family Caregiver Alliance (FCA) provides up-to-date information about research on the treatment, care, and diagnosis of Huntington's Disease. It also offers online support group and chatroom.  New
    • Services by State. This tool helps family caregivers locate public, nonprofit, and private programs and services nearest their loved one—whether they are living at home or in a residential facility. Resources include government health and disability programs, legal resources, disease-specific organizations and more.
  • Huntington Society of Canada Our families and volunteers tell a powerful story of caring people who pull together to improve the quality of life for Canadians impacted by Huntington disease (HD). HD is a fatal hereditary brain disorder with devastating effects on both the mind and body. It is like having the symptoms of Alzheimer's, Parkinson's and Schizophrenia all in one disease. The good news is, with recent medical breakthroughs many researchers and scientists believe that once we are successful in stopping the progression of HD we will also find the answers to many other neurological diseases. This organization raises funds to deliver individual and group counselling service to support individuals and families living with Huntington disease (HD) and to fund medical research to delay or stop the progression of the disease. [Canada]
  • Huntington's Disease Association exists to support people affected by the disease and to provide information and advice to professionals whose task it is to support Huntington's disease families. The HDA is financed through the generosity of trusts, foundations, the statutory and corporate sectors, branches of the HDA, members and friends. [UK]