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 Excellence
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: (716) 273-4147
Fax (716) 341-7510
Appointments
To schedule an appointment at the Huntington's Disease Family Center or for
additional information please call, (716) 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: (716) 341-7525
Fax: (716) 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) 305-9172
Mailing address:
Columbia HD Center
630 W. 168th St., P&S Box 16
New York, NY 10032
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 requirefor example an MRI. Although many people do have private insurance, we do a financial 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, MS
Phone: (212)305-4655
Clinical Research Studies
Columbia NY COE is an active member of the Huntington Study Group (HSG).
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 and 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 Facilities-Other
Albany Medical Center
Department of Clinical Genetics, A-88
43 New Scotland Avenue
Albany, NY 12208-3478
Contact: Lenore Palladino, MS, RN
Phone: (518) 262-5120
Fax: (518) 262-5924
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
Dr. Don Higgins
Albany Medical Center/College HD Clinic
Office Hours:
Contact:
Speciality: We participate in a national organization of investigators which will be evaluating new experimental approaches to the treatment of Huntington's disease called The Huntington's Study Group. Drs. Factor and Molho also help coordinate, and comprise the neurological arm of the integrated Huntington's disease gene testing program |
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Special Notices Special Notices
Sept. 12-16, 2002
HD Camp
Rotary Sunshine Camp
Rush NY
(12 miles outside Rochester)
Participants: Persons with HD
Contact: 716-341-7400
Volunteers also needed
Support Group Meetings
When: Call for dates
Time: 7 pm
Where: Center for the Disabled
314 S. Manning Blvd.
Albany
Contact: Jonathan Clyman
Email:
Phone: 518-437-5631 or
Upstate NYCenter 716-341-7400
Participants: All associated with HD
When: 4th Monday each month
Time: 7:00 PM
Where: Lourdes Hospital
Riverside Drive
Binghamton
Contact: Susan Halpin
Email:
Phone: (607) 757-9137
Participants: All associated with HD
When: 2nd Wed. each month
Time:
Where: Call for location
Contact: Pat Bucholtz
Email:
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
Email:
Phone: (516) 616-3129
Participants: All associated with HD.
When/Times: Call to see if open to public
Where: Terence Cardinal Cooke Health Care Center
1249 Fifth Avenue
New York, New York 10029
Phone: (212) 360-3600
Westchester/Rockland
At-Risk
When: 1st Wednesday each month
Time: 6:30
Where: Call for details
Contact: Beth Mintz Friedberg, CSW
Email: Mintzmail@cs.com
Phone: 845-353-5311
Participants: People at-risk for HD
When: Last Wednesday each month
Time: 6:30-8:30 pm
Where: White Plains Hospital
Address:
White Plains, NY
Contact: Beth Mintz Friedberg, CSW
Email: Mintzmail@cs.com
Phone: 845-353-5311
Participants: Caregivers of HD patients
When: 2nd Tues each month
Time: 6:15 pm
Where: Huntington's Disease Family Center
Address:
Rochester, NY
Contact: Amy Chesire
Email:
Phone: (716) 341-7400
Participants: Caregivers, at-risk, and persons with HD.
On-site childcare provided
When/Location: Call for information
Contact: Kathy Anderson
Email:
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
Phone: (212) 360-3600
Webiste http://www.chcn.org/tcc
50-bed residents HD unit, caring for people in late-early to late stage HD.
State Long-Term Care Ombudsman
NY State Long-Term Care Ombudsman
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
Information Hotline: (212)-732-4455
Website: http://www.fria.org/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
Healthcare Association of New York State (HANYS)
http://www.hanys.org/pub_comm/facility/cnty_nm.htm
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.The Healthcare Association of New York State (HANYS) serves as the key advocate for more than 550 non-profit and public hospitals, health systems, nursing facilities, home care agencies, hospice and adult day care programs, and other related health care facilities throughout New York State. |
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