Family Resources

Family Resources

Huntington’s Disease Support Group

Orange Caregiver Resource Center Sponsored Support Group
Time of Meeting: 2nd Sunday of each month, 6:00pm - 7:30pm
Facilitator: Karin Little, MSW (714) 870-3530 x2425

Meeting Location: Starting June 8th, 2008

Carmel Village
17077 San Mateo
Fountain Valley, CA 92708

The support group customarily breaks into 3 groups, for Affected Persons, for those at Risk, and for Caregivers & Family & Friends. The groups offer an opportunity to explore feelings and concerns, share ideas, and receive support from our HD community.

Huntington's Disease Clinic

Gottschalk Medical Plaza at University of California, Irvine

Contact UCI Neurology for appointments and inquiries:

Nanda (949) 824-0190 Fax: 949/824-3135

UCI Medical Center - Huntington’s Disease Clinic

Genetic Testing
UC Irvine Medical Center
2100 Medical Plaza Drive
Irvine, CA 92697-6255

Contact:   Ann Walker, Adjunct Professor
             Pediatrics – Genetics Department
phone:     1-714-456-5789
Fax:        1-714-456-5330

Access Service

ACCESS is OCTA's shared-ride service for people who are unable to use the regular, fixed-route bus service because of functional limitations caused by a disability. These passengers must be certified by OCTA to use the ACCESS system by meeting the Americans with Disabilities Act (ADA) eligibility criteria.

Supplements

These are some supplements currently being used as trial agents in the Huntington's Disease Drug Works study. Make sure to click the link to learn more. Purchasing these items together with a friend will save you money on shipping costs.

Trehalose

Has only been available commercially until now. Very easy to purchase through this website NeuroCoat. Also read this informative article on the HD Lighthouse.

Fish oil

Omegabrite fish oil will cost you more money than store brands because of it's purity. It is well worth the money because there is no fishy aftertaste.

Omegabrite

Blueberry extract

Make sure to include a bottle pump with your order. They make serving a lot easier and they are reusable. I have not seen blueberry extract sold anywhere else. Brownwood Acres

Creatine and Coenzyme-Q10

Available in health stores.

Financial Planning - Be Prepared: Friends of HDSA-Orange County are welcome to volunteer their advisement expertise to help families make decisions that enable them to be better financially prepared for life events.

Ask questions about Financial Planning and Long-Term Care Insurance.

Feel free to call:; Tom Pearson, Merrill Lynch
Office: (949) 223-6267
thomas_pearson@ml.com

Other financial professionals who would like to be listed please notify the webmaster.

Housing & In-Home Care: For person-to-person info regarding HD patient in-home care options & problem solving, call Tiffany Treadway directly: (714) 290-7766.; Tiffany works in the home care industry & is a "real" person familiar with Huntington's - please call to ask questions about:; - insurance coverage for in-home care; - family co-op daycare; - advancing housing options in Orange County (we are; looking for a donation home or land to be used; exclusively for HD patient care); - specialized, personalized needs; - sound advice on what to do for the "in between"; stages of HD

Advance directives for HD individuals and their families: This is a workbook intended to guide you in making decisions about your future. Although this was designed for Huntington’s disease patients and their families, it can be a useful guide for others. Please note that we are calling this a “workbook” because it is not a legal document. Use it as a guide for discussions with your family about your feelings and wishes.

Advance Directives Workbook.pdf

Huntington's Disease Recommendations to the Field:
"Lifting the Veil of Huntington's Disease": http://www.promotingexcellence.org/huntingtons/monograph/

List of California Nursing Homes by County: http://www.canhr.org/NH_Data/CountyMenuHTML.html

A Caregiver's Handbook for Advanced-Stage Huntington's Disease

A Physician's Guide to the Management of Huntington's Disease

HDSA National Youth Alliance

California Department of Social Services: Our mission is to serve, aid, and protect needy and vulnerable children and adults in ways that strengthen and preserve families, encourage personal responsibility, and foster independence.

http://www.dss.cahwnet.gov/cdssweb/FindServic_2312.htm

National Caregivers Library: The National Caregivers Library is one of the most extensive online libraries for caregivers that exist today. www.caregiverslibrary.org

Long Term Care Information: U.S. Department of Health & Human Services [HHS]