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Huntington's Disease Support Information

Virginia

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Virginia State
                              Flag  Virginia
HDSA Chapter
Washington Metro Area Chapter

President:   
Murrey Jacobson
Phone:         
(703) 204-4634
Help Line:    (703) 323-1403
Fax:               (703) 573-3047
Address:     
8303 Arlington Blvd.,
                       Suite 210 
                       Fairfax, VA 22031-2900
Email:
Website:      Unable to open
Newspaper: Published quarterly, not on line

Mission:  Serve HD familes throughout metro DC area, Virginia and parts of Maryland offering two support groups a month. We host a variety of  fundraisers and are looking to increase our for ways to better improve our outreach, our services and to help contribute to research. We always need more volunteers. So please call if at all interested!
 
Center of Excellence
 
HDSA Center of Excellence
The University of Virginia
Fontaine Avenue Facility
500 Ray C. Hunt Drive
Charlottesville, VA, 22903
 
For appointments for any of the below services:
 
Contact:  Pat Allinson M.S., C.G.C.
                  Genetic Counselor
Email:      
psa9m@hscmail.mcc.virginia.edu
Phone:     (434) 924-2665
 
Movement Disorders Clinic:
Individuals who have symptoms of Huntington's Disease may be seen for a neurological examination by Dr. Madaline Harrison, the director of the HD Clinic. Laboratory testing and other evaluations are performed as indicated.Neuropsycho-logical testing is undertaken if warranted.
 
For an appointment 
Contact:   Dr. Harrison
Phone:     (434) 924-5304
Toll free hotline: 1-866-290-4528

HD Clinic Schedule:
A full-day, multidisciplinary clinic for HD is open
once a month. Services are available from Neurology, Psychiatry, Psychology, PT/OT, Speech, Social Work, and Genetics at this time. It's usually on the 4th Monday, but the date occasionally changes so please call first.

They also offer a predictive testing program for
at-risk individuals, and also does some HSG-sponsored clinical trials.
 
 
Clinic Staff
Barbara Haskins, M.D., Psychiatry
Carol Manning, Ph.D., Neurology
John Zenker R.P.T., Physical Therapy
Carol Clerico, O.T.R., Occupational Therapy
Patricia Ledbetter, Ph.D., Speech/Swallowing
Kenneth Cady, M.S.W., Social Work
Patricia Allinson, M.S., Genetics  
 
Genetic Testing
Toll free hotline: 1-866-290-4528
 
Individuals who have a family history of Huntington's Disease may wish to know whether they have inherited the disorder.
A predictive testing program is available which follows the protocol recommended by the Huntington's Disease Society of America.
 
In the predictive testing protocol, at-risk individuals are seen for psychological and genetic counseling, a neurological examination, and neuro-psychological testing before genetic testing is performed.  Sample Consent Form
 
They also offer some HSG-sponsored clinical trials.

Physicians
 
HD Experienced
Need your input
 
Look up doctors - 
 
Professions License
 
Other Information
GovBenefits.gov is a screening tool provided by the federal government to help you find government benefits that you may be eligible to receive.
 
Insurance Consumer Guides  for Getting and Keeping Health Insurance - A guide for each state and the District of Columbia - fifty-one in all. The Guides summarize your protections, and so may not answer all of your questions. They are not a substitute for legal, accounting, or other professional advice.
Special Notices
  check out  HDSA's HD National Events Calendar
 
Support Group Meetings
 
City        Not Known
When:         Last Thursday most months
Time:           7 pm - 9 pm
Where: 
      Goodwin House
Address:
City:
Contact:     Chris Lederman
Phone:        703-698-7450 Ext. 375

Bethesda MD
When:       Date Changes, please call.
Time:
Where:     424 Montgomery Avenue
                   Bethesda MD
Contact:  Sara Lieberman
                  Social Worker
Phone:     301-439-6141
Email:
Participants: Individuals At-Risk

Charlottesville CoE
Support Groups:
Support group meetings for patients and
caregivers are held once a month in conjunction with the HD Clinic.
Time:  12:30-1:30 p.m. and are open to all.
It is not necessary to have an appointment at the clinic in order to attend. An informational talk about a topic of interest is given starting at 12:00 p.m. before the meetings begin. A schedule of talks and meetings is available f
Contact:  Pat Allinson, M.S.
Phone:     (434) 924-2665.
Toll-free helpline 1-866-290-4528
 
Tidewater, VA
Serving Peninsula and Southside areas
When:      3rd Friday of each month
Time:         7:00 PM
Where:     Mary Immaculate Hospital
                   2 Bernadine Drive
                   Newport News, VA
Contact:  
Yvonne Beyer
Phone:      (757) 867-6794
Email:       Mombeyer@aol.com   or
 
Contact:   Joyce Maltby 
Phone:      (757) 874-6385
Email:       joymaltby@mindspring.com
 
Nursing Homes
 
HD Experienced
Need your input
 
State Long-Term Care Ombudsman
Virginia State Long Term Care
Virginia Association of
Area Agencies on Aging
530 East Main Street, Suite 428
Richmond, Virginia 23219
Phone:   (804) 644-2923
FAX:      (804) 644-5640
 
VIRGINIA CAREGIVER HELP
Search the Virgina www.SeniorNavigator.com
local services database using the keywords:
respite care to find a variety of respite
services offered throughout Virginia.
 
State Resources:
 
Virginia Homepage
The person receiving care must need help performing 2 or more activities of daily living. The limitation of ADLs needs to be
certified by a licensed physician. The relative receiving care, needs to have been cared for at least 6 months in the previous calendar year, though the six months need not be consecutive. This program applies to any individual regardless of age. This program is administered by the  Virginia Department of Social Services
 
 
Misc. State Support 
Family Services-Map by State
Guardianship Programs
A listing of guardianship programs in each state
 
United Way-Search By Zip Code will provide you with information on the United Way in your area.  If they have a website, they usually have a section called "How Do I Get Help?"  Click on it and look for their "Quick Guide" (To Human Services) help in your area. You can print it out. Most guides are in PDF format and are a great resources to have on your refrigerator!