HDSA awards over $2M in grants to Center of Excellence network

Dartmouth–Hitchcock Medical Center is newest network member

Margarida Maia, PhD avatar

by Margarida Maia, PhD |

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The Huntington’s Disease Society of America (HDSA) is awarding 56 grants totaling more than $2 million to expand its Centers of Excellence network, which is dedicated to providing comprehensive care to people with Huntington’s disease.

Dartmouth–Hitchcock Medical Center in New Hampshire joins last year’s total of 55 grant-funded Centers of Excellence. The society also named the University of Massachusetts Chan School of Medicine as a new regional partner site, joining 10 others.

This brings to 67 the number of grant-funded Centers of Excellence and regional partner sites, now reaching 36 states across the U.S., plus Washington, DC.

“The Huntington’s Disease Society of America is committed to providing HD [Huntington’s disease] families access to the best possible care for Huntington’s disease,” said Teresa Srajer, chair of HDSA’s national board of trustees, in a society press release. “By continuing to expand the reach of the HDSA Centers of Excellence network, HDSA ensures that more HD families can find the care and support they need as they navigate the many challenges of this devastating rare disease.”

Huntington’s is caused by mutations in a single gene that provides instructions for making a protein called huntingtin. The mutations result in a longer than usual version of the protein that builds up in the brain, causing nerve cells to become damaged and die.

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The symptoms of Huntington’s typically appear around midlife and worsen over time, including changes in movement, thinking, and behavior. The disease affects about 41,000 Americans, with more than 200,000 estimated to be at risk of inheriting it.

There is no cure for Huntington’s, but available medications and nonmedication treatments can help manage its symptoms.

HDSA Centers of Excellence are multidisciplinary clinics that offer a range of comprehensive care services to people with Huntington’s. These include access to a team of healthcare professionals with expertise in the neurodegenerative disease, genetic testing and counseling, and clinical trials of new medications.

The clinics’ goal is to improve the quality of life for people with Huntington’s and their families, and to advance clinical research toward a cure for the disease.

“We are grateful for the dedication and compassionate support that the staff at these clinics provide HD affected families,” said Louise Vetter, president and CEO of HDSA. “It is because of the incredible generosity of the HD community and our partners that we are able to continue to increase access to the very best in HD care.”

U.S. clinics with experience in providing care to Huntington’s patients and their families, and that are committed to give them high-quality comprehensive care and the chance to participate in clinical research can apply to become an HDSA Center of Excellence.