Huntington's Disease Support Information

New York

Index~HD Search
Convention Scholarship Fund
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Pennsylvania~Delaware Valley
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Wyoming Non-HD Specific Caregiver Support
Miscellaneous State Resources
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Index~HD Search

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New York State
New York Upstate
HDSA Chapter
President:       Sue Morris
Phone:             (585) 341-7400
Address:          115 Hardwood Lane 
                          Rochester, NY 14616
Contact Us
Services: Family services, information and education, state conferences, advocacy issues, and a Camp for people with HD.

Peer Led Groups: Albany, Binghamton, Rochester, Buffalo, NYW, Westchester, Rockland, Long Island, and Syracuse
(see next column)
Centers of Excellences
HDSA Center of Excellence
The University of Rochester
919 Westfall Rd, Buldg C. Suite 220
Rochester, NY, 14618,
Contact:   Leslie Briner
Phone:      (585) 273-4147
Fax            (585) 341-7510

To schedule an appointment at the Huntington's Disease Family Center or  for additional information please call,  (585) 273-4147
Services offered by 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
  • Referrals for social work, home care
    services, and equipment 
  •  Long term care planning referrals 
  • Brain Donation Program
Affiliated with Strong Memorial Hospital for
Radiology, Speech Pathology, Nutrition,
Physical Therapy, and Occupational Therapy.

Genetic Testing:

Contact: Charlyne Hickey, MS, RNC
Phone:   (585) 341-7525
Fax:        (585) 341-7510

North Shore
HDSA Center of Excellence
North Shore University Hospital
444 Community Drive, Suite 206
Manhasset, NY, 11030,
Contact:    Dennis Zgaljardic
Phone:       (516) 869-9527
Fax:            (516) 869-9535
New York City
HDSA Center of Excellence
Columbia Health Sciences/
NYS Psychiatric Institute
1051 Riverside Drive, Room 1501
New York, NY 10032
Phone:    212-305-5779
Mailing address:
Columbia HD Center
630 W. 168th St., P&S Box 16
New York, NY 10032
Contact:   Deborah Thorne, C.S.W.   
Phone:      (212) 305-9172
Fax:           (212) 305-2526
Costs: The Huntington's Disease Center is unique in that it does not charge patients for their visits. Patients do have to pay for any additional tests that they require, for example an MRI. Although many people do have private insurance, we do a assessment with all individuals and families and make every effort to determine Medicaid eligibility and disability.
Genetic Testing:
The Huntington's Disease Center offers presymptomatic genetic testing for individuals with a family history of HD who may want to know if they inherited the gene that causes HD. If necessary, there is also genetic testing to confirm the physicians diagnosis. The genetic testing program follows the guidelines recommended by the Huntington's Disease Society of America. 
Genetics:   Jennifer Williamson-Catania,  MS
Phone:        (212)305-4655
Clinical Research Studies
Columbia NY COE is an active member of the
Contact:     Carol Moskowitz, RNC
Phone:        (212)305-1303
Karen Marder, MD, MPH (Director)
Elan Louis, MD, MS
Carol Moskowitz, RNC
Psychiatry: Karen Anderson, MD
Social Work: Deborah Thorne, CSW;  
                      George Todak, CSW
Physical Therapy: Lori Quinn, EdD PT
Speech & Swallowing Therapy: 
Jeanne Thomson, MS
Dietary: Ann Gaba, MS RD
Neuropsychology: Yaakov Stern, PhD;  
Ivan Simonetti, BA spital for Radiology,
Speech Pathology, Nutrition, Physical
Therapy, and Occupational Therapy.
Genetic Testing-Other
Albany Medical College
Parkinson's Disease and Movement Disorders Center
215 Washington Avenue Ext
Albany, NY  12205
Contact:  Michelle Goyer, MS
Phone:    (518) 452-0914
Fax:         (518) 452-5953

SUNY Upstate Medical University
Division of Genetics
750 East Adams Street
Syracuse, NY 13210
Contact:     Laura L. Thomson, M.S.
Phone:        (315) 464-7610
Fax:             (315) 464-6329

State University of NY
Health Science Center
College of Medicine
Division of Genetics
750 East Adams Street
Syracuse, NY 13210
Phone:      (315) 464-7610
Fax:           (315) 464-7564
Physicians HD Experienced
Other Cities

Albany Medical College
Parkinson's Disease and Movement Disorder Center
215 Washington Ave Ext
Albany, NY  12205
Donald S. Higgins, Jr., MD
Website:  HD Patients
Office Hours
Monday-Friday 8 AM - 4:30 PM
Contact:   Connie Nickerson, LPN
Phone:     (518) 452-0914
Fax:          (518) 452-5953

Specialty: The center is an active participant in the
multidisciplinary center for Huntington's disease with the following specialty services provided at a single site:
  • Neurology
  • Nursing
  • Genetic counseling
  • Psychology
  • Speech pathology (swallowing)
  • Nutrition
  • Social work
Free - A practical guide intended to help family caregivers feel less alone and overwhelmed. It offers resources, facts, and advice about caring for a loved one, as well as the caregiver.
Special Notices
Click on ->Coming Events
Support Group Meetings
When:      Call for dates
Time:         7 pm
Center for the Disabled
                   314 S. Manning Blvd.
Contact:    Jonathan Clyman
Phone:       518-437-5631 or
Upstate     NYCenter 
Participants: All associated with HD
When:        4th Monday of month
Time:          7:00 PM
Where:       Lourdes Hospital 
                     Riverside Drive
Contact:     Susan Halpin
Phone:        (607) 757-9137
Participants: All associated with HD
When:        2nd Wed. of month
Where:       Call for location
Contact:      Pat Bucholtz
Phone:         (716) 627-3547
Participants: Caregivers, persons with HD, persons at-risk

Long Island
When:        1st or 2nd Sunday
Where:      Good Samaritan Hospital
                    Guild Conference Room
                     West Islip, NY
Contact:      Pat Lambert
Phone:         (516) 616-3129
Participants: All associated with HD. 
New York City
People at-risk for HD
When:         1st Wed or Thurs of month
Time:           6:30 P.M.
Where:       Call for details
Contact:     Jennifer Willliamson, MS
Phone:         212-305-4655
Caregivers of HD patients
When:          Last Wednesday of month
Time:            6:30-8:30 pm
Where:        White Plains Hospital
Address:      Westchester County
                       White Plains, NY
Contact:        David Saks 

Phone:          212-360-3711
Note:  People from the tri-state area are welcome!
When:         2nd Tues of month
Time:           6:15 pm
Where:       HD Family Center
                      Rochester, NY
Contact:      Amy Chesire
Phone:         (585) 341-7400
Participants: Caregivers, at-risk, and persons with HD. On-site childcare provided

Time:             Call for information 
Contact:        Kathy Anderson
Phone:           315-451-9206
Participants: HD families
Nursing Homes
HD Experienced
Terence Cardinal Cooke
Health Care Center
1249 Fifth Avenue
New York, New York 10029
Contact:    David Saks
Phone:       212-360-3711

48-bed residents HD unit, caring for people in

late-early to late stage HD.

State Long-Term Care Ombudsman
NY State Long-Term Care
Office for Aging
2 Empire State Plaza
Agency Bldg. #2
Albany, NY 12223-0001
Phone: (518) 474-7329
FAX:     (518) 474-7761
Friends and Relatives of
Institutionalized Aged (FRIA)
11 John St., Suite 601
New York,  NY 10038
Info Hotline: (212)-732-4455
Monday, Wednesdays and Fridays
10:00 AM - 5:00 PM EST
English and/y en Espaņol
Help With
-Placing a Relative in a Nursing Home
  in New York City
-Problems with Nursing Home Care
   in New York City

Looking for a Health Care Facility in New York State? The map can be used to help you locate a health care facility in New York State. To locate a hospital, nursing home, home health agency, hospice, or diagnostic & treatment center, click on the county you are interested in and a list of facilities will be displayed.
Adult Care Facilities by county (see map) click on your county.
New York State Veterans Homes
by county (see map) click on your county.
Nursing Home Patient Care Complaints
State Resources
Caring for an Older Driver
For families, friends and caregivers, what to do about an aging loved one who is at-risk driving can be both perplexing and paralyzing. When You Are Concerned is a handbook developed to help families, friends and caregivers facing the dilemma of what to do when an aging loved one is at-risk driving. When You Are Concerned is, in part, a compilation of the experiences of families and others who have successfully resolved an unsafe aging driver situation. (Also available as a PDF file.)
Caregiver Resource Centers currently exist in and serve 17 counties of New York State and offer direct assistance and support as well as information on other resources, including support groups, available to caregivers in their areas. If there is not a center near you, contact your local offices for the aging.