For Immediate Release
Contact: Christopher Cosentino, Director of Marketing & Communications
Phone: (212) 242-1968 x229


Huntington’s Disease Society of America Presents Results from 3,600 HD Family Surveys

New York, NY (September 22, 2015) – Today more than 250 family members affected by Huntington’s disease (HD) from across the United States will join the Huntington’s Disease Society of America (HDSA) at the U.S. Food and Drug Administration’s (FDA) Public Meeting on Huntington’s Disease Patient-Focused Drug Development. The hearing, which was advocated for by HDSA, is a one-of-a-kind opportunity for families to directly educate officials about the devastating impact of HD.

At the highly-anticipated meeting, the FDA will hear from HD patients and family members about their experience with the symptoms of HD, as well as the treatment needs and priorities of families.

“We are grateful that the FDA included Huntington’s disease in one of only 20 public meetings to inform the regulatory landscape of drug development,” said Louise Vetter, Chief Executive Officer of HDSA. “We are confident that by hearing directly from affected families, the FDA will appreciate the urgency of bringing new therapeutic options to market for Huntington’s disease, as well as gain better insight into what types of treatments matter most to patients and their families.”

To ensure that the FDA hears from the greater HD community and not only those who are participating in-person and via webcast, in preparation for this hearing HDSA developed two surveys asking HD patients and caregivers about their perspectives on the HD symptoms that matter most to them and the types of treatments they desire. HDSA received more than 3,600 responses from these online surveys and shared the top-line results from these important surveys with the FDA prior to the public meeting.

The data from the surveys show that the impressions on the impact of HD symptoms can be very different between HD patient and caregiver. However, both groups agree that there is a critical need for new medicines that can treat the cognitive symptoms associated with HD, as these are the symptoms that most commonly force HD patients from their employment and home. Additionally, despite having one FDA approved drug for chorea associated with HD, there surveys suggest there is need for more effective therapies for movement symptoms.

“We hope the outcome of the FDA hearing and community data will illuminate to regulators and drug makers that the patient and caregiver perspectives on HD symptomatology and treatment efficacy should be critical considerations in the shaping of future HD clinical development efforts,” added Mrs. Vetter.

Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. Many describe the symptoms of HD as having ALS, Parkinson’s and Alzheimer’s – simultaneously.


The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with Huntington’s disease and their families.

HDSA was founded in 1968 by Marjorie Guthrie, the wife of legendary folk singer Woody Guthrie. Woody died from HD complications in 1967 when he was only 55 years old, but the Guthrie family legacy lives on at HDSA to this day.

To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit or call (800)345-HDSA.