Huntington's Disease Support Information


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Miscellaneous State Resources
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 Click on map for California yellow pages
California State Flag California
Northern HDSA Chapter
3940 Industrial Blvd  Suite 100 D
West Sacremento, CA 95691
Chapter Mission:
Information and Referrals; Professional Social Worker; Support Groups, Advocacy, Annual Chapter convention, support to HD families.
Social Worker & Help Line
Toll Free:
Rick Henry
UCDMC Neurology Clinic
1-888-828-7343 [Calif. only]
Check -> HDSA's Calendar of Events  for current events in this area.
HDSA Regional Representative:
Penny Riley
3940 Industrial Blvd-Suite 100D-P.O. Box 2280
West Sacramento, CA , 95691
(916) 372-1894
(916) 371-2468
Support Groups
For a listing of current support groups, click here:
Berkeley (East Bay)
When:     3rd Saturday monthly
Time:       2-4 p.m.
Where:    St. John's Presbyterian Church
                  2727 College Ave.
Contact:  Helen Levy
Phone:     1-415-202-3872
When:    4th Monday of the month
Time:      7-8:30 p.m.
Where:   Chico Mall, Community Room 
                 1950 E. 20th St.
Contact:  Mountain Caregiver Resource Center
Phone:     1-800-822-0109
Note:       No meetings in the summer
When:     1st Wednesday monthly
Time:       6-7:30 p.m.
Where:    Valley Caregiver Resource Center
                   5424 North Palm, Suite 108,
Contact:  Yee Vu
Phone:     1-559-447-2140
Marin County
For dates and Times
Contact:   Andrea Zanko
Phone:      1-415-476-9320
Palo Alto (South Bay)
When:     2nd Tuesday monthly
Time:       7:00-8:30 p.m.
Where:    First Babtist Church 
                  305 North California 
                  Palo Alto
Contact:  Lucille Towner
Phone:     1-650-967-0679
or              Erin Kennedy
Phone:     1-408-972-3331
Red Bluff
When:      4th Monday monthly
Time:        7:00 - 8:30 p.m.
Where:     705 Luther Road
Contact:   Connie Massie
Phone:       1-530-824-9076
When:       2nd Wednesday monthly
Time:         7-9 PM.
Where:      UC Davis Cancer Center 
                    4501 "X" Street, Rms 1101-1103
Contact:   Kelley Heal
Phone:      1-916-971-0893
or              Susan George
Phone:     1-800-635-0220
San Francisco
When:       1st  Wednesday monthly
Time:         7:00-8:30 p.m.
Where:      RCH, Inc. 
                   207 Skyline Blvd. (near SF Zoo)
Contact:   Diane Serber
Phone:     (415) 781-8516
Santa Cruz
Support groups, one for people with HD, and one for friends and family. If anyone has any questions, or is interested, please email Michelle at
Santa Rosa~Sonoma County
When:     2nd Monday  every other month
Time:       7:00-8:30 p.m.
Where:    Catholic Charities -Conf.Room
                  2325 Montgomery Dr
                  Santa Rosa
Contact:  Marsha Marin
                   Redwood Caregiver Resource Center 
Phone     (800) 834-1636
or             (707) 542-0282
San Jose
When:     Call for dates and times
Where:    Kaiser Permanente Medical Center 
                   Genetics Department Building #1 
                   5755 Cottle Road 
                   San Jose 95123
Contact:   Carrie Stoltzfus, PhD
Phone:      1-408-972-3300
Support/Therapy Group (gene positive
Other Caregiver Support
Family Caregiver Alliance
690 Market Street, Suite 600
San Francisco, CA 94104
Helpline:   1-800-445-8106, ext. 333.
Contact:   Carol Levenson, R.N., M.S.
San Francisco  FCA Services

Family Caregiver Alliance improves the quality of life for caregivers through education, research, services and advocacy.

Center of Excellence/Genetic Testing
Center of Excellence
University of California Davis Medical Center
4860 Y Street Suite, 3700
Sacramento, CA, 95817

HD Clinic Schedule: see below

Center Director:   Dr. Vicki Wheelock
Associate  Physician-Neurology
Contact:   Terry Tempkin, RNC, MSN, ANP
Phone:      1-916-734-6525

Medical Helpline:
TBD, R.N., M.S 24 hours a day
Phone: 1-800-445-8106, ext. 333.

Social Worker:
Rick Henry 
Tel: 916-734-6277 
Genetic Counselor  - Barbara Briscoe
Clinical Nurse Specialist - Sally Klien
Therapist - Rosy Chow
We offer three (3) clinics a month designated for HD care. Two clinics are on the UC Davis Medical Center campus, and one clinic per month is held at Kaiser in Sacramento. Kaiser and UC Davis have combined aspects of their Movement Disorder clinics to provide broader access and more comprehensive services for HD families in No. Calif
All specialty and referral services are available through the HD clinics. The HD multi-disciplinary team is headed by Dr. Vicki Wheelock, and clinic patients are seen by the Nurse Practitioner, a Physical Therapist, Social Worker  and HD Team Psychiatrist.
Occupational Therapy, Speech Therapy , Home Health, Hospice, and Nutrition Services are available by consultation. 
A full array of medical  specialties are avail-able on the Medical Center campus, as well as in hospital care when needed.
Some HD families need nursing home place-ment. The Nurse Practitioner and Social Worker are available to assist families with placement and developing a nursing home plan of care. The HD team is available for in-service programs in area nursing homes, and will expand the nursing home program to include routine visits to HD patients that are institutionalized.
HD Clinic & Genetic Testing
Division of Medical Genetics-UCSF
533 Parnassus, Box 0706
San Francisco, CA 94143
Dr. Bruce Miller
Department of Neurology
HD Clinic Thursdays
Appointments: 415-476-9320
Genetics Testing/Counselor
Contact:   Andrea Zanko, MS
                 Division of Medical Genetics
Address:   Same as above
Office Hours - Monday through Friday:
                           9 am - 5 pm.  
To schedule an appointment:
Appt:       1-415-476-9320
Fax:         1-415-476-9305
The Clinic provides counseling, predictive and
confirmatory genetic testing and facilitate the
monthly Marin County Support Group.  The clinic has a wonderful, growing staff of  physicians. These are neurologists, psycho-logists, neuro-behavioralists and psychiatrists dedicated to  neurodegenerative diseases.
Kaiser Permanente Hospital
Kaiser Hospital
260 International Circle
San Jose, CA 95119-1197
Contact:    Genetic Counselors
                  Annette, Yen Batty, MS,
                  Julie Lundberg, MS
Phone:       1-408-972-3300
Fax:           1-408-972-3298
Kaiser Permanente of Southern California
Department of Medical Genetics
13562 Cantara Street
Panorama City, CA 91402-5497
Contact:   Harold Bass, MD
Phone:      1-818-375-2073
Fax:           1-818-375-3108
(Services for Kaiser members only)
Physicians-Other Cities
HD EXPERIENCED Need your input
California's resources are excellent, and too many to list on this page.  Please click here to access
 State Resources
Miscellaneous State Support
Guardianship Programs
A listing of guardianship programs in each state
Patient Advocacy Foundation State Locator
  L to W
Ensuring equal access to health care to all Americans. Find out what is available in your community.  Information available on (to mention only a few from the entire list): Children,  Children's Health Insurance Programs, Community Referral, Disability Services, Financial Assistance, Food Stamps, Health Care, Insurance, Legal, Medication/Drug Assistance and Special Needs
Private Fuel Funds
There are non-federal dollars available from local fuel funds, which frequently are contributed by your neighbors when they pay their utility bill. Ask the state energy assistance office for the local phone number of the fuel fund nearest your residence.
A directory of official state, county and goverment websites
Select from the list of State Benefit Program Contributors to read more about each State's benefits. To determine if you may be eligible to receive benefits you must select from the list of State Benefit Program Contributors and then click "am I eligible?" to begin the questionnaire.
State Resources-information or links related to Assistive Technologies, Disability Resources, Domestic Violence Legal Information, Family Legal Guides, Family Services, Guardianship Programs, Health & Human Services Quick Locators, Legal Assistance, Legal Forms - State & Federal, Long-Term Care Ombudsman Programs, Medicaid, Medicaid Waiver Programs, Social Security Offices, Summer Camp Programs, United Way~Local Support and more.
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) for help in your area. You can print it out.  Most guides are in PDF format and are a great resources to put on your refrigerator!
Other Resources
Applying For Government Benefits
Dental-Even if you cannot pay for dental care there are ways in which to receive help. Contact the American Dental Association (ADA) (1-800-621-8099) to learn about dentists who assist individuals on fixed incomes by offering their services at reduced fees. is a screening tool provided by the federal government to help you find government benefits that you may be eligible to receive.
There is no way to cover all of the issues one might possible need to consider when selecting insurance coverage. Provides information on Free Care, General Information, Children, Claims & Insurance Rates, Life Insurance, Long Term Care, Medicaid/Medicare and Pre-Existing Conditions and more.
Other Support Resources
Activities of Daily Living 
Activities of daily living are a commonly used term in the health care and professional caregiving world to describe a person's ability to care for him or herself. In a progressive disease, such as Huntington's, measuring your loved one's Daily Living capabilities on a frequent basis (quarterly, semi-annually or annually) can provide you and their primary care physician the ability to evaluate the severity of the changes and develop a plan of care that allows for meeting both the physical and psycho-social needs of the care recipient.
Information covered on this link is resources which might help HD families apply for Government and State disability benefits; how to estimate your benefits; makes appeals; how your physician can assist you; and links to information for professionals such as HDSA Chapter Social Workers as well as other resources. The information is designed to provide general advice only.
Communication/Speech in Huntington's Disease. Currently have descriptions of several things causing problems in HD such as Aphasia, Apraxia, Miscommunication, Cognitive Issues, plus many more. More to be added when time is available.
Looking for prescription drug insurance? Find information on prescription drug plans and plans. Look up any medication prescribed, check on Alternative medicines, and learn about safety issues. Learn about the "sliding scale" if you don't have insurance. See the "New Drug Checklist-Q&A's", "Keeping Track of Side Effects" Over-The-Counter stuff and more. Also excellent links to Rx Programs, Benefit Check Up, Medicare, and discount pharmaceutical drug discount programs. Information contained on the individual pages of this site is provided for your reference and convenience only.
Avoiding Probate, Conservator~Guardianship, Estate Planning, Living & Other Trusts, Wills & Beneficiaries, Employment Issues, Financial Aids. Divorce Issues, Legal, Emergency Planning and more.
What Is A Feeding Tube? When To Consider One. Feeding Tube Decision in HD, Tube Feeding in Advanced Stages of HD,Using Baby Foods, Oral & Dental Care, Jean Miller Articles & Checklist and a ton of resources including charts to help in care.
This website provides helpful forms to families living with Huntington's Disease to help organize their daily caregiving needs. It contains DOZENS of forms you can use everyday, most of them are in Word format for easy printing and sharing!
HD Medical Definitions
An accumulation of definitions I found which are sometimes used to describe symptoms of/or tests for HD or discuss other diseases or condition which have symptoms similar to Huntington's Disease. The list is very long, but interesting!
Huntington's Disease Symptoms
It is extremely important that you are familiar with all the possible symptoms, which might be affecting the quality of life for the person with HD. The symptoms appearing in this section can either be related to Juvenile Huntington's Disease, Huntington's Disease in adults, some other condition, or be caused by a side affect to medication(s). This site is still being updated and developed.
There is no way to cover all of the issues one might possible need to consider when selecting insurance coverage. Provides information on Free Care, General Information, Children, Claims & Insurance Rates, Life Insurance, Long Term Care, Medicaid/Medicare and Pre-Existing Conditions and more. If you would like more information on a particular subject, use one of the Search Engines to help you find it.
Information here is either directly about Juvenile Huntington's Disease, or other information, which will hopefully be helpful to families who have a child with JHD or are concerned about their child having JHD. Information from the old JHD site, which I can no longer access to make changes, is being moved here as time permits. When this is completed, this site will be deleted.
Caregiving articles written by Jean Miller, Betty Ann McDorman, Louise Wilkinson and others plus links to other articles.
There are quite a few articles that describe the various "stages" of HD. This site provides a Compilation of The [all] Stages Of HD. There are some resources available at the end of "stage" plus each one is in Word format for printing or sharing.
This section deals specifically with Swallowing problems associated with HD. It covers the description of problems in swallowing, therapies and products, questions to ask/FAQS, articles written specifically for HD, Safety & Warning Signs, brochures, special diets, the 5 levels of food consistency, testing procedures used to determine swallowing capacity, and more. Many items are available in Word for printing or sharing. Additional information and tips will be added as time permits.