The Huntington’s Disease Family Center (HDFC) is comprised of a group of neurologists, nurses, scientists, a neuropsychologist and a social worker as part of the Department of Neurology who specialize in the care of individuals and families affected by HD.
We believe there is hope for improved treatments through research. We have a long-standing, internationally recognized research program that focuses on both clinical and laboratory investigations.
Services Offered by the Huntington’s Disease Family Center (HDFC)
- Comprehensive HD evaluation
- Psychological counseling for clients and families
- Genetic testing for adults who are at risk for HD
- The opportunity to participate in research activities
- Support groups for both individuals with HD and caregivers
- People With Huntington’s Disease (PWHD) and Caregiver meetings are held the second Tuesday of each month. Please call the HD line at 585-341-7400 for more information
- Referrals for social work, home care services, and equipment
- Long-term care planning referrals
- Brain donation program
We are affiliated with Strong Memorial Hospital for Radiology, Speech Pathology, Nutrition, Physical Therapy, and Occupational Therapy.
The University of Rochester Huntington’s Disease Family Center was designated a Huntington’s Disease Society of America (HDSA) Center of Excellence in 1998.
As an HDSA Center of Excellence, the goals of the Huntington’s Disease Family Center are:
- To provide quality, comprehensive, and affordable care and education to those affected by HD and their families.
- To assist with symptom management for individuals with HD and their families and caregivers.
- To find treatments to slow the progression of the disease while working toward a cure through observational and clinical research.
Understanding Huntington’s Disease
Huntington’s Disease (HD) is an inherited, progressive, degenerative brain disorder that affects both mind and body. Symptoms may include involuntary movements, personality change, depression, withdrawal, and difficulty thinking.
HD is a genetic disorder that is usually inherited within families. Both men and women have an equal chance of inheriting the gene from an affected parent. The children of an individual with HD each have a 50 percent chance of inheriting the gene.
While there is not a current cure for this disease, researchers have made significant progress and are optimistic about future treatments.
HD Family Center Staff
Ira Shoulson, M.D., Director
Karl Kieburtz, M.D., Co-Director
Peter Como, Ph.D., Co-Director
Charlyne Hickey, MS, RNC, Nurse Specialist
Kevin Biglan, M.D., M.P.H., Neurologist
Ray Dorsey, M.D., M.B.A., Neurologist
Frederick Marshall, M.D., Neurologist
Bernard Ravina, M.D., M.S.C.E., Director, MIND Unit
Carol Zimmerman, RN, Nurse Specialist
Amy Chesire, CSW-R, MSG, Co-Director and Social Worker
Irenita Flynn Gardiner, RN, Nurse Specialist
Elise Kayson-Rubin, MS, RNC, Nurse Specialist
Aileen Shinaman, JD, Executive Director of the Huntington Study Group
Cardy Tucker, Appointments
Location, Appointments, and More Information
Huntington’s Disease Family Center
919 Westfall Road, Building C, Suite 220
Rochester, NY 14618
For appointments, call 585-341-7500
Huntington’s Disease Society of America (HDSA) Upstate New York Chapter: 585-341-7400
For more information, call 585-273-4147
The Huntington’s Disease Society of America (HDSA) – The HDSA is a national agency dedicated to finding a cure for HD, improving the lives of affected families, supporting research to benefit the entire HD community, and providing education and awareness to the public regarding the disease.
The HDSA Upstate New York Chapter, which began in 1976, participates and supports the Center of Excellence through sponsored fundraising events, education of the public regarding the disease, and providing updated information to families affected by HD.
If you have any questions or would like to join in the quest to help support the efforts of this organization, please contact:
HDSA, Upstate New York Chapter
PO Box 25237
Rochester, NY 14625
585-341-7400
Movement and Inherited Neurological Disorders Unit
> Huntington’s Disease Clinic
Research Information
Clinical Trials Coordination Center