Resources
Huntington’s Disease Support Group
Orange Caregiver Resource Center Sponsored Support Group
Day & Time: 2nd Sunday of each month, 6:00pm - 7:30pm
Facilitator: Karin Little, MSW (714) 870-3530 x2425
Meeting Location: 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
UCI Medical Center - 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
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
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.
- 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
The Advance Directives Workbook is 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.
- Huntington's Disease Recommendations to the Field:
- "Lifting the Veil of Huntington's Disease"
- List of California Nursing Homes by County
http://www.canhr.org/NH_Data/CountyMenuHTML.html
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]
http://www.longtermcare.gov/LTC/Main_Site/index.aspx