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Massachusetts HDSA Chapter
groups in the 5 New England states. Please contact their
office for additional referrals/see below
President: Janice Gedaminsky
Email: info@hdsa-ne.org
Phone: 508-872-8102
Fax: 508-872-8103
Address: HDSA/MA
Executive Director : Kimberly D. Gleason
Email: kimberly@hdsa-ne.org
Address: 1253 Worcester Road, Suite 202
Framingham, MA 01701
Phone: 508-872-8102
Fax: 508-872-8103 Toll Free: 888-872-8102
Newpaper: Yes, but not on line
Services: Support Groups (see below), Help Line &
Referrals, HD Camp (Fall), Volunteer Program,
Education, Outreach, Social Worker and a
Speaker's Bureau
Social Services
HDSA MA Chapter & Worcester
Contact: Kenna Sullivan, LICSW
Phone: 508-872-8102 x 12
Berkshire/Lenox
Contact: Laura Page LICSW
Phone:413-442-4951
Greater Boston
Contact: Kathy Knoblauch, LICSW
Phone: 508-872-8102 x 32
Maine:
Contact: Karen Percival, LSW
Phone: 888-872-8102 x 31
New Hampshire & Other:
Contact: Virginia Goolkasian
Email: 1308TNG01@sunh.com
Phone: 800-770-0840 x 19
Rhode Island:
Contact: Donna Freeman, LICSW
Phone: 888-872-8102 x 33
Providence/Vermont Contact:
Contact: HDSA 888-872-8102
HDSA Center of Excellence
Massachusetts General/Tewksbury Hospital
VBK, Fuit Street
Boston, MA, 2114
Hours:
Services:
Contact: Colleen Skeuse
Email: cskeuse@partners.org
Phone: (617) 726-5892
Fax (617) 726-5346
Social Worker: Kathy Knoblauch
Physicians:
Anne B. Young, M.D., Ph.D.
Edward D. Bird, M.D.
Jang Ho Cha, M.D.
Walter J. Koroshetz, M.D.
Jeffrey Macklis, M.D.
George Plotkin, M.D.
Lewis Sudarsky, M.D.
Geneticist:
Richard H. Myers, Ph.D.
The Huntington's Disease (HD) Unit strives to treat a
variety of physical and psychological aspects of HD.
Patients with HD are evaluated, treatment plans are
designed and families and patients are counseled.
Services offered are:
-Counseling for Patients at risk
-Social workers to help patients and their
families deal with a myriad of social issues.
-Patients with other movement disorders
resembling HD are evaluated and treated
when appropriate.
-Patients are referred to the Rehabilitation
Clinic at the Middlesex County Hospital for
special services
The Middlesex clinic is staffed by physicians from the
Massachusetts General Hospital HD Unit.
MRI scans are scheduled at the Charlestown MGH
facility and interpreted by a radiologist and the
staff neurologists
RESEARCH
Patients at the Huntington's Disease Unit participate
on a purely voluntary basis in a variety of important
research activities. The ultimate goal of the research
is to develop an effective clinical trial of medication
to determine whether HD can be prevented, cured,
or ameliorated. See website for current clinical trials
To Schedule an Appointment:
Massachusetts General Hospital
Contact: Diane Greenwell
Phone: (617) 726-5532
Brigham and Women's Hospital
Contact: Lisa
Phone: (617) 732-5771
Genetic Testing Facility
Boston University School of Medicine
Neurogenetics Laboratory
Department of Neurology
Boston, MA 02118
Contact: Judy Sinsheimer
Phone: 617-726-2603
Fax:
Program Director: Dr. Richard H. Myers
Nursing Homes - HD Experienced
Laurel Lake Center
620 Laurel St.
Lee, MA 01238
Contact: Jim Pollard
Email: jjpollard@MEDIAONE.NET
Phone: 413-243-2010
Sunbridge Care &
Rehabilitation for Lowell
19 Varnum Street
Lowell, Ma. 01850
Contact: Virginia Goolkasian
Email: 1308TNG01@sunh.com
Phone: 800-770-0840 x 19
State Long-Term Care Ombudman
Massachusetts State Long-Term Care Ombudsman
Executive Office of Elder Affairs
1 Ashburton Place, 5th Floor
Boston, MA 02108-1518
Phone: (617) 727-7750
Fax: (617) 727-9368
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1st Annual HDSA Swim
Where: Nantasket Beach
Time TBA
Contact: Cari
Phone: 508-872-8102 x 44
Details: Open to adults and children (age 12 and up). The swim will include two timed heats: one for the casual swimmer and one for the competitive swimmer. Prizes awared to the best time in each category. Additional prizes to be announced.
Registration: $100 Registration fee.
Deadline: July 10th. August 3rd, 2002
Fourth Annual Summer Saturday for Families
Location: The Guthrie Center
Housatonic, Massachusetts
Time: 10:00 a.m. - 4:00 p.m.
Contact: Jim Pollard
Phone: 413-243-2010
Sponsor: The Guthrie Center & Laurel Lake Center for Health & Rehabilitation. Meet Internet Pioneers Storm King, Rob Laycock, Rennette Davis, Jean Miller, Carmen Leal, John Lester, Steve Ireland and Dr. Marsha Miller.
September 21st, 2002
2nd Annual Walking for a Cure:
One Step at A Time/The Kevin Ganley Walk
Where: SunBridge Care & Rehab for Lowell
Varnum Street in Lowell MA
Phone: HDSA Office at 508-872-8102
A leisurely 1.5 or 3 mile walk around the neighborhood at SunBridge Care and Rehab for Lowell. Join the residents, staff, friends and neighbors for this annual walk.
September 21st, 2002
Walking for a Cure: One Step at A Time
Where: Artesani Park
Contact: HDSA Office at 508-872-8102
Support Group Meetings
Please contact the group leader prior to
attending your first group meeting.
Our Southern New Hampshire Group will begin in
April and meet in Concord, NH. Specific location
TBA in March.
Our Mid-State Vermont Group will begin in May
to coincide with HD Month. It will be held in
Burlington VT and is being created in conjunction
with Fletcher Allen Health Care.
All visitors to this site are encouraged to
contact the Mass. HDSA office for additional
referrals in MA, ME, NH, RI & VT. For the
most updated support group information our
website is (see above).
Greater Boston - PHD Group
People With Huntington's Disease
When: 2nd Wednesday of the month
Time: 10:30a-12:30p
Where: Boston Medical Center, Boston
Contact: Kenna Sullivan
Email:
Phone: 508-872-8102 x 12
Greater Boston - Caregiver Group
When: 2nd Wednesday of the month
Time: 7 - 8:30pm
Where: Tewksbury Hospital -Tewksbury
Contact: Kathy Knoblauch, LICSW
Email:
Phone: 508-872-8102 x 32
Greater Boston -
Early Stage PHD Group
When: 3rd Thursday of the month
Time: 7 - 8:30pm
Where: Cambridge (call for address)
Contact: Kathy Knoblauch, LICSW
Email:
Phone: 508-872-8102 x 32
Berkshire/Lenox Family Group
When: 3rd Thursday of the month
Time: 6 - 7:30pm
Where: Berkshire Medical Center, Pittsfield
Contact: Laura Page, LICSW
Email:
Phone: 413-442-4951
When: 1st Thursday of the month
Time: 6:30 - 8p
Where: Coyne Nursing Home
Rockland MA .
Contact: David Banks, MA
Email:
Phone: 781-771-7401
When: 3rd Wednesday of the month
Time: 6 - 7:30pm
Where: Baystate, Springfield
Contact: Amy Fowler, PsyD
Email:
Phone: 508-872-8102 x 34
Worcester Area Family Group
When: 3rd Wednesday of the month
Time: 7 - 8:30pm
Where: UMASS Medical Center -Worcester
Contact: Kenna Sullivan, LICSW
Email:
Phone: 508-872-8102 x 12
Other- Lowell Support Group
When: One Saturday each month - dates TBA
Sponsor: Sunbridge Care & Rehabilitation for Lowell
Where: 19 Varnum Street
Lowell, Ma. 01850
Contact: Virginia Goolkasian
Email: 1308TNG01@sunh.com
Phone: 800-770-0840 x 19 |
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