Huntington's Disease Support Information


Index~HD Search
Convention Scholarship Fund
State HD Support
District of Columbia
New Hampshire
New Mexico
New York
North Carolina
North Dakota
West Virginia
Washington State
Pennsylvania~Delaware Valley
Rhode Island
South Dakota
Wyoming Non-HD Specific Caregiver Support
Miscellaneous State Resources
Other Resources
Click on map for yellow pages.
                              State Flag 
Arizona HDSA Affiliate
Toll Free
Phil Hardt
P.O. Box 7666
Phoenix, AZ 85011-7666
Services: Social workers, informational and
educational material, in-service training,
Friendship Retreat for HD familes. Newsletter published 3 times a year
Special Notices
Social Workers
Lois Zeidman
Linda Saxon
9112 E. 39th Street
Tuscon, AZ 85730
Support Groups
Phoenix Area
Saturday of each month
2:00 PM
St. Joseph's Hospital
Conference Rooms 4 & 5
3rd Avenue & Thomas
Phil Hardt
Tucson Area
3rd Sunday of each month
2:00 PM
Palo Verde Psychiatric Hos
Zemsky Room2
2695 N. Craycroft
Tom Caldwell
1-520-529 8793
HD Resources
Genetic Testing
Edwards Medical Plaza no longer tests for HD.
No HDSA Approved Clinic currently available.

HDSA Approved Clinic
University Medical Center
2501 N. Campbell Ave.
Tucson, AZ. 85724
Contact:   Leslie Pettijohn
Phone:      (520) 626-2152
HD Experienced

Movement Disorder Clinic
Dr. John Caviness
Mayo Clinic
13400 E. Shea Blvd.
Scottsdale, AZ  85259
(408) 301-8112
Dr. Lawrence Stern at the U. of AZ
U of A Medical School
2501 N. Campbell Ave.
Tucson, AZ 85724
Phone: 520-626-6609
An expert on HD. He has worked closely with the AZ HDSA chapter and with support groups,
ACLF/Nursing Homes
HD Experienced
La Colina
2900 E. Ajo Way
Tucson, AZ 85714
Phone: 520-294-0005

Santa Rosa Care Center
1650 N. Santa Rosa Ave.
Tucson, AZ 85712
Phone: 520-795-1610
Posada Del Sol
Health Care Center
2250 N Craycroft Rd

Tucson, AZ.  85712
Phone: 520-886-5481
Adult Day Care Centers
Adult Day Healthcare Center
Arizona Dept. of
Veteran's Services
Ray Harvey, MOH
4141 North 3rd Street
Phoenix, AZ 85012
Phone:   602-248-1572
For those needing socialization, therapeutic recreation and rehabilitation during the day
State Resources
Arizona State Homepage
Answers to frequently asked questions about the laws and requirements in the State of Arizona on advance card documents.
 Medication Formularies
    (Scottsdale/Paradise Valley)
A Guide to Services
Adult Foster Care Homes and Adult Day Health Care Facilities
Training Programs
Office of Vital Records
Bureau for Adult Services
Bureau for Persons with
Determination Policy (new) (PDF)
  Mental Impairments
Children's Rehabilitative Services 
(602) 542-1860
Developmental Services  includes locations
and functions of the Arizona Department of Health Services (ADHS), Division of Assurance and Licensure Services (ALS) (PDF)
and Medical Necessity Definition
(Nursing Homes)
-Provider Databases Assisted Living, Behavioral  Health Facilities, Child Care Facilities and Group Homes, Group Homes
for the Developmentally Disabled, Long
Term Care Facilities and Medical Facilities
Systems and Services  are for persons
of all ages who have a family income
no greater than 200% of Federal Poverty Guidelines, are uninsured and ineligible
for AHCCCS and/or Medicare, and are
residents of Arizona
(Do Not Resuscitate) Form
Used by providers offering discounted
fees for services to persons without
health insurance
State Agencies
Program (SHIP)
Misc. 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 Helpful 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.
Arizona Consumer Guide for Getting and Keeping Health Insurance - A guide. The Guide summarize your protections, and so may not answer all of your questions. It is not a substitute for legal, accounting, or other professional advice.
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.