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.
Alabama State Flag
HDSA Chapter
Toll Free
Kathy Hayman
5750 Picketts Lane
Pinson, AL. 35126
1-205-325-3877 or
Special Notices
Check HDSA's HD National Events Calendar for current events in this area.
Support Groups
Call for information
Providence Hospital
Diabetes Center,
PMOP Suite D-36
6801 Airport Boulevard
Mobile, AL. 36685
Cindy Nelson
Trussville & Guntersville
3rd Sunday of each month
2:30 - 4:00 PM
First Methodist Church
Trussville, Al.
Kathy Hayman
Participants: All 
 (rotates monthly)
4th Friday of each month
12:30 - 4:30
UAB Medical Center Complex
Kathy Hayman
Center of Excellence & Genetic Testing
HDSA Center of Excellence
The University of Alabama Birmingham
HD Clinic at the Children’s Hospital of Alabama
1600 7th Avenue South, CBH 314
Birmingham, AL, 35233-1711
Clinic Location:
The Children's Hospital of Birmingham
Clinic #8
Website:  Clinic #8 [use the below phone #s]
Center Director:   Leon Dure, M.D
Social Worker: Lisa Snyder
Telephone:         858-622-5800
Toll Free
Donna Pendley
1- 205-996-7850
1-800 309-HUNT
Area Covered: Besides Alabama, the referral base also includes portions of Mississippi, Florida and Tennessee.
Hours of Operation: 4th Friday of every month
Services:  Clinic services include speech, physical, and occupational therapies: nutritional, neurological and social services. The Center puts forth a great effort to ensure the best care for our patients. They  now provide noon conferences where patients, caregivers and their families are invited to have lunch and participate in discussion and lecture from guest speakers that discuss issues of interest related to HD.
Genetic Testing
Department of Genetics
University of Alabama at Birmingham
720 20th street South
Kaul Building - Suite 241
Birmingham, AL 35294-0011
Judy Franklin, RN, MSN       
Other Physicians - HD Experienced
Need your input
State Resources
NOTE: The majority of documents available from the State, below, are in PDF format.
    -Elder Abuse Hotline 1-800-458-7214

ACL/Nursing Homes
Alabama Nursing Home Association-Consumer Information:
    -Help Numbers
Form 154 - Agreement between Nursing Home and Medicaid Patient (.pdf)
Form 204/205 - Application for Elderly & Disabled (nursing home, ICF/MR, Home and Community Based Waiver, and SSI-Related)
Alabama Lifespan Respite Resource Network-is a project of UCP of Huntsville and Tennessee Valley, funded by a grant from the Alabama Council for Developmental Disabilities.
2505 Inverness Lane
Birmingham, Alabama 35242
(205) 991-0927  (866) RESTALA
    -Find respite in your area [AL]
    -Respite Information Advocacy and 
     information sites about respite for
    -Alabama Disability -Support Groups,
     agencies, and resources.
A sliding fee scale is used to determine the clients shared cost for certain services.  Cost sharing judgments are made based on the care recipients income. If the care recipients income falls below the national poverty level, the client is not expected to pay anything for the services.   In any case, contributions (donations) are accepted by the Area Agency on Aging for all programs. Call Area Agency on Aging (1-800-AGE-LINE) and make an appointment with the Alabama Cares Coordinator, who will explain the process.
    -Application to CMS for waiver [living at 
       Community Care vs Nursing Home Care
Access Alabama Home Ownership Program- makes mortgages more affordable for low- to moderate-income home buyers who have disabilities or family members with disabilities.
Phone (205) 823-3818 or (800) 433-8002
Equipment Loan Program -Alabama STAR program provides short-term loans of assistive technology to persons with disabilities who wish to try out different types of devices. This program also provides equipment loans to rehabilitation professionals so they can better assess and evaluate persons with disabilities using technology.

Food Stamps-provides monthly benefits to eligible low income households to help buy the food. The eligibility rules and benefit amounts, based on income and household size. Applications for the Food Stamp Program are available in all county DHR offices.
Alabama Department of Human Resources
Food Stamp Division
50 North Ripley Street
Montgomery Alabama   36130
Public Assistance is made up of two major programs which serve low income familiesa financial assistance program and a medical assistance program: The Family Asssistance Program and the Medicaid for Low Income Families Program [below]. These programs provide temporary cash assistance to eligible families. Public Assistance FAQs
Family Assistance Program
ACLF/Nursing Homes
HD Experienced
Need your input
Alabama State Long-Term Care Ombudsman
RSA Plaza, Suite 470
770 Washington Avenue
Montgomery, AL 36130
Phone:  (334) 242-5743
FAX:      (334) 242-5594
Hospice/End of Life
Alabama-Alabamians For Better Care at Life's End - 1801 14th Avenue South
Birmingham, AL 35205-4931
Phone:      205-975-9815
Fax:           205-975-8173
Toll Free:  1-877-594-5050
Contact:    Kay Johnson, RN, MPH,-Project Director
Form 165 - Medicaid Hospice Election and Physician's Certification
Living Will-The Living Will form, A Gift For Your Family :Advance Directive for Healthcare, Living Will and Healthcare Proxy
Guide for Local Organizers-Planning Ahead for Your Future Health Needs
Alabama HIPAA [Health Insurance Portability and Accountability Act]
    -Limited Medicaid Programs [no drugs] 
    -Medicaid FAQS
Form 211 - Application for Medicare Savings for Qualified Beneficiaries
Medicaid for Low Income Families Program provides medical assistance for low income families with a dependent child under age 18
Medicare: State Health Insurance Assistance Program -Important Information for Medicare Beneficiaries
Vital Statistics
Miscellaneous 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 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.
To Getting & Keeping Health Insurance. 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.