on map for California's yellow pages
Greater Los Angeles HDSA Chapter
Center of Excellence/Genetic Testing
Center of Excellence
HDSA Center of Excellence at UCLA
The Regents of the University of California
300 UCLA Medical Plaza,
Los Angeles, CA 90095
Director: Dr. Susan Perlman, M.D. - Neurology
Need your input for other physicians
UCLA Medical Center
10833 Leconte Avenue
Los Angeles, CA
Contact: Michelle Fox, MS, Senior Genetic
California's resources are excellent, and too many to list on this page. Please click here to
to view them:
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!
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!
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.