on map for California yellow pages
Northern HDSA Chapter
3940 Industrial Blvd Suite 100 D
West Sacremento, CA 95691
Information and Referrals; Professional Social Worker; Support
Groups, Advocacy, Annual Chapter convention, support to HD families.
Social Worker & Help Line
UCDMC Neurology Clinic
1-888-828-7343 [Calif. only]
HDSA Regional Representative:
3940 Industrial Blvd-Suite 100D-P.O. Box 2280
West Sacramento, CA , 95691
When: 3rd Saturday monthly
Time: 2-4 p.m.
Where: St. John's Presbyterian
Contact: Helen Levy
When: 4th Monday of the month
Time: 7-8:30 p.m.
Where: Chico Mall, Community Room
1950 E. 20th St.
Mountain Caregiver Resource Center
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
For dates and Times
Contact: Andrea Zanko
When: 2nd Tuesday monthly
Time: 7:00-8:30 p.m.
Where: First Babtist Church
305 North California
Contact: Lucille Towner
When: 4th Monday monthly
Time: 7:00 - 8:30 p.m.
Where: 705 Luther Road
Contact: Connie Massie
When: 2nd Wednesday monthly
Time: 7-9 PM.
Where: UC Davis Cancer
4501 "X" Street, Rms 1101-1103
Contact: Kelley Heal
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
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 firstname.lastname@example.org
Santa Rosa~Sonoma County
When: 2nd Monday every other month
Time: 7:00-8:30 p.m.
Where: Catholic Charities
Contact: Marsha Marin
Redwood Caregiver Resource Center
or (707) 542-0282
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
Support/Therapy Group (gene positive
Other Caregiver Support
Family Caregiver Alliance
690 Market Street, Suite 600
Helpline: 1-800-445-8106, ext. 333.
Contact: Carol Levenson, R.N., M.S.
Family Caregiver Alliance improves the quality of life for caregivers through education, research, services
Center of Excellence/Genetic Testing
University of California Davis Medical Center
4860 Y Street Suite, 3700
Sacramento, CA, 95817
HD Clinic Schedule: see below
Center Director: Dr. Vicki Wheelock
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
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
Contact: Andrea Zanko, MS
of Medical Genetics
Address: Same as above
Office Hours - Monday through Friday:
9 am - 5 pm.
To schedule an appointment:
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
260 International Circle
San Jose, CA 95119-1197
Contact: Genetic Counselors
Yen Batty, MS,
Kaiser Permanente of Southern California
Department of Medical Genetics
13562 Cantara Street
City, CA 91402-5497
Contact: Harold Bass, MD
(Services for Kaiser members only)
HD EXPERIENCED Need your input
California's resources are excellent, and too many to list on this page. Please click here to access
Miscellaneous State Support
Patient Advocacy Foundation State Locator
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!
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.
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 DefinitionsAn 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!
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.