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New York Upstate
HDSA Chapter
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
Rochester
HDSA Center of Excellence
The University of Rochester
919 Westfall
Rd, Buldg C. Suite 220
Rochester, NY, 14618,
Contact: Leslie Briner
Email: lbriner@mct.rochester.edu
Phone:
(585) 273-4147
Fax (585) 341-7510
Appointments
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
HDSA Center of Excellence
North Shore University Hospital
444 Community Drive, Suite 206
Manhasset, NY, 11030,
Contact: Dennis Zgaljardic
Email:
neurodjz@juno.com
Phone: (516) 869-9527
Fax:
(516) 869-9535
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.
Contact:
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
Staff:
Neurology:
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
Contact:
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
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.
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Special Notices
Support Group Meetings
When: Call for dates
Time: 7 pm
Where:
Center for the Disabled
314 S. Manning Blvd.
Albany
Contact: Jonathan Clyman
Phone: 518-437-5631
or
Upstate NYCenter
716-341-7400
Participants: All associated with HD
When: 4th Monday of month
Time: 7:00 PM
Where:
Lourdes Hospital
Riverside Drive
Binghamton
Contact: Susan Halpin
Phone: (607) 757-9137
Participants: All associated
with HD
When: 2nd Wed. of month
Time:
Where: Call for location
Contact:
Pat Bucholtz
Phone: (716) 627-3547
Participants: Caregivers, persons with HD, persons at-risk
When: 1st or 2nd Sunday
Time:
Where: Good Samaritan Hospital
Guild Conference Room
Address:
West Islip, NY
Contact: Pat Lambert
Phone:
(516) 616-3129
Participants: All associated
with HD.
New York City
When: 1st Wed or Thurs of month
Time:
6:30 P.M.
Where: Call for details
Contact:
Jennifer Willliamson, MS
Email: jlw61@columbia.edu
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
Email:
dsaks@chcsnet.org
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
Address:
Rochester, NY
Contact: Amy Chesire
Phone:
(585) 341-7400
Participants: Caregivers, at-risk, and persons with HD. On-site childcare provided
When:
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
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.
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by county (see map) click on your county.
Nursing Home Patient Care Complaints
1-888-201-4563
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State Resources
CAREGIVING
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.
DISABILITY
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