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Advocacy: Huntington's Disease Youth Organization

doi: 10.1097/01.NNN.0000421654.02005.1d
Departments: The Waiting Room

Advocacy: Spotlight on the Huntington's Disease Youth Organization.



When Matt Ellison witnessed the progression of Huntington's disease (HD) in his father, he also discovered a lack of resources for affected families—particularly young people. “The impact of HD on your life can be huge, but the support available to young people is miniscule,” says Ellison, a 23-year-old from England.

So he created the Huntington's Disease Youth Organization (HDYO). Huntington's disease is a devastating, hereditary, degenerative brain disorder that affects an individual's ability to walk, talk, and reason. Currently, HD has no cure and limited treatment options. Children have a 50-percent chance of inheriting the fatal gene if they have a parent with the disease. The goal of HDYO is to empower youth with knowledge about HD and provide a supportive community to help one another cope with realities of the disease.

The organization recently launched its website, “The website is a remarkable effort by Matt and many other young people who are dedicated to this cause,” says BJ Viau, HDYO's U.S. board member.

To read the new guideline for patients and caregivers from the American Academy of Neurology on treating involuntary movements in HD, go to

©2012 American Academy of Neurology