HUNTINGTON’S DISEASE SOCIETY OF AMERICA AWARDS MORE THAN $2.1 MILLION TO EXPAND HDSA CENTERS OF EXCELLENCE NETWORK TO SIXTY-EIGHT SITES
New York, NY (February 13, 2024) – The Huntington’s Disease Society of America (HDSA) is expanding its HDSA Centers of Excellence network of comprehensive care clinics with 57 grants totaling $2,100,557. In addition to the 57 grant funded facilities, eleven regional partner sites were also named, ensuring expert HD care at 68 distinct medical facilities in 37 states across the nation and Washington, DC.
HDSA Centers of Excellence are multi-disciplinary care teams with expertise in Huntington’s disease that share an exemplary commitment to providing family-focused care and enabling clinical research for this complex, rare, neurodegenerative disease. The expansion from 56 grants in 2023 to 57 grants in 2024 comes from the addition of University of Connecticut Health Center as the newest HDSA awarded clinic. Launched in 1998, the HDSA Centers of Excellence network has grown from just 20 sites as recently as 2015.
“Increasing access to the best possible care is central to our mission to improve the lives of people with Huntington’s disease and their families,” said Teresa Srajer, Chair of HDSA’s National Board of Trustees. “The continued expansion of the HDSA Centers of Excellence network ensures that more HD families can find the high quality care and support they need as they navigate the many challenges of this devastating rare disease.”
The HDSA Centers of Excellence provide an elite team approach to Huntington’s disease care, support and research. Patients benefit from expert neurologists, psychiatrists, therapists, genetic counselors, social workers and other professionals who have extensive experience working with families affected by HD and who work collaboratively to help families plan the best HD care program throughout the course of the disease. Applications to become an HDSA Center of Excellence are open to all clinics in the United States who have demonstrated experience caring for HD affected families and share HDSA’s commitment to high-quality, comprehensive care and access to clinical research.
Louise Vetter, President & CEO of HDSA added, “Families helping families is central to HDSA’s mission work. All of the Huntington’s Disease Society of America’s programs are made possible by the dedication and generosity of the HD community who know that HDSA Centers of Excellence are the lynchpin in providing care and supporting the clinical research that brings us closer to a cure for this devastating rare disease.”
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. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes HD. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of HD are described as having, ALS, Parkinson’s and Alzheimer’s – simultaneously.
THE 2023 HDSA CENTER OF EXCELLENCE GRANTEES (In alphabetical order)
BOLD = Newly designated HDSA Center of Excellence or partner site for 2024
Albany Medical College (NY)
Barrow Neurological Institute (AZ)
Beth Israel Deaconess Medical Center (MA)
- Partner Site: University of Massachusetts, Chan School of Medicine (MA)
Cleveland Clinic (OH)
Columbia University Neurological Institute (NY)
Dartmouth Hitchcock Medical Center (NH)
Duke University (NC)
Emory University (GA)
Hennepin Health Care (MN)
Henry Ford Hospital (MI)
Indiana University
Johns Hopkins University (MD)
Massachusetts General Hospital
Medical University of South Carolina
MedStar Georgetown University Hospital (DC)
Northwestern University (IL)
Ochsner Health System (LA)
Ohio State University
Oregon Health & Science University
Rocky Mountain Movement Disorders Clinic (CO)
Rowan University School of Medicine & Rutgers University RWJ Medical School (NJ)
Rush University Medical Center (IL)
Sanford Health (ND)
Stanford University (CA)
Stony Brook University Hospital (NY)
University of Alabama, Birmingham
- Partner site: University of South Alabama
University of Arkansas for Medical Sciences
University at Buffalo (NY)
University of California, Davis Medical Center
- Partner site: Kaiser Permanente Sacramento (CA)
University of California, Irvine
University of California, Los Angeles
University of California, San Diego
University of California, San Francisco
University of Cincinnati (OH)
University of Colorado
University of Connecticut Health Center
University of Florida
University of Iowa
University of Kansas Medical Center
University of Louisville (KY)
University of Miami (FL)
University of Mississippi Medical Center
University of Nebraska Medical Center
University of Pennsylvania
- Partner site: St. Luke’s University Health Network, Bethlehem, PA
University of Pittsburgh Medical Center (PA)
University of Rochester (NY)
University of South Carolina School of Medicine, Prisma Health
University of South Florida
- Partner site: Central Florida Center for Huntington’s Disease, Winter Park and Orlando, FL
University of Texas Health Science Center at Houston, McGovern Medical School
- Partner site: Covenant Medical Group Neurology, Lubbock, TX
- Partner site: Texas Movement Disorders Specialist, PLLC, Georgetown
- Partner site: University of Texas Health Science Center San Antonio
University of Utah
University of Vermont, Frederick Binter Center for Parkinson’s Disease & Movement Disorders
University of Virginia
University of Washington (WA)
- Partner site: Selkirk Neurology, Spokane, WA
University of Wisconsin
Vanderbilt University Medical Center (TN)
- Partner site: The Cole Center for Parkinson’s and Movement Disorders, University of Tennessee Medical Center, Knoxville
- Partner site: University of Tennessee, Erlanger Neurology, Chattanooga
Virginia Commonwealth University
Washington University School of Medicine (MO)
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The Huntington’s Disease Society of America (HDSA) is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. 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 HD and their families. Support for the 2023 HDSA Centers of Excellence was made possible in part by the generosity of the Griffin Foundation.
To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call (800) 345-HDSA.
MEDIA CONTACT
Mynelly Perez
Director of Marketing & Communications
212-242-1968, ext. 214
mperez@hdsa.org
