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.
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Arkansas HDSA Chapter
Jeanie Funkhouser
P.O. Box 556
Morrilton, AR 72110
None listed
Quarterly Newsletter: Support from Neurologist at UAMS, video and educational sessions.
Special Notices
Support Group Meetings
Call 1-800-558-3370 [unless otherwise noticed] and leave a message for questions about any Arkanas support groups.
Region 1,2 & 3
Ft. Smith, Salem and Pine Bluff Regions
Call for info.
Region 4 SW AK
Call for info.
Region 5 - Little Rock
2:00 - 4:00
8103 Westword
Little Rock, AR.
 Region 5A Conway
2:00 - 4:00
Genetic Testing
University of Arkansas
Medical School
800 Marshall Street Slot 512-22
Little Rock, AR 72202-3591
Contact: Dr. Mary Curtis
or            Marianne Lotito, MS
Phone:    (501) 320-2966
Fax:         (
501) 320-1564
University of Arkansas Medical School
Department of Neurology
Outpatient Center,  Third Floor
4301 West Markham Slot 547
Little Rock, Arkansas 72205
Phone:   (501) 686-5135
University of Arkansas for Medical Sciences
Dept. of Neurology- UAMS
Movement Disorders Clinic
4301 W. Markham, Slot 500;
Little Rock, AR 72205
Phone:   (501) 686-8000
Fax:    (501) 686-8689     
Assistant Professor of Neurology
Services:  Clinic sees patients with tremor, involuntary movements, and gait difficulty.  Conditions with such symptoms include 
Huntington's disease,  chorea, etc.
State Support
Arkansas Homepage
(health services/NH etc)
Family Services click to find about more about below services
Arkansas Search Sites
ACLF/Nursing Homes
HD Experienced
Need your personal recommendations.
State Long Term Care Ombudsman Program
Arkansas State
Long-Term Care Ombudsman
P.O Box 1437, Slot 1412
Little Rock, AR 72201-1437
Phone:   (501) 682-2441
FAX:       (501) 682-8155
ARKids First health insurance
English: 888-474-8275
Spanish 800-482-8988
Provides health insurance to children who otherwise might not get medical coverage, offering low-income children a comprehensive benefits package. 
Alternative Community Services
(Home & Community Based) 1-501-730-9987
Medicaid-funded Waiver program that offers
an array of services to persons with
developmental disabilities in their homes
and communities. 
Services children with chronic illness,
handicapping conditions, or special health
care needs. 
Commodity Distribution Program
Spanish 800-482-8988
A statewide program available to clients 18 and older who are endangered and unable to comprehend their danger. 
Department of Health
Developmental Day Treatment Clinic
Provides Medicaid-funded clinic-based services to adults and children with developmental disabilities. 
Developmental Disabled - Service Coordinators
Div. of Mental Health - Services 
Food Assistance Program 
This program distributes commodities to
food banks, soup kitchens, shelters and
other nonprofit agencies. 
Food Stamp Program  1-800-482-8988
Provides food assistance to eligible house-holds to cover a portion of their food budget. 
Integrate Support 1-501-682-7845
Offers a variety of services to children and
adults, that enable people to remain in their communities and reduce the need for institutionalization.
Reimburses health care providers for covered medical services provided to eligible needy individuals in certain categories.  Eligibility is determined based on income, resources, Arkansas residency and other requirements. 
Juvenile Diagnosis and Evaluation
Am including this in case a person with
Juvenile HD gets into trouble.  This office
would be the one to provide information
to about Huntington's disease.
Low Income Home Energy
Assistance Program
Provides financial assistance to help meet the cost of home energy (gas, electric etc). 
Medicaid Transportation 1-800-482-1141
Provides information on non-emergency
Medicaid transportation. 
Nursing Home
Involuntary Discharge Appeals
When a resident of a long-term care facility feels lthat they are being unfairly or illegally discharged from a facility, they can utilize the Involuntary Discharge Appeal process.
Rehab Click  to find out about the 20 state-wide offices for persons with physical, mental, cognitive or sensory disabilities.  Those that wish to apply must first contact a rehabilitation counselor, there is one assigned to each of the state's 75 counties.  Go to website for addressees and contacts.
State Operated Residential Services
Centers in Alexander, Arkadelphia,
Booneville, Conway, Jonesboro and Warren
Services include residential, habilitation-rehabilitation, medical, social work, occupational, physical. and speech therapies, psychology, and community development and outreach services.
Weatherization Assistance Program
Installs energy conservation materials and
appliances in the homes of low-income families annually to lower utility bills. 
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.

PDF Document - 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.