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

Index~HD Search

Click on map for CT yellow pages
Connecticut State Flag 
Connecticut HDSA Chapter
Toll Free
Joy Woolley
P.O. Box 719
Southington, CT. 06489
None listed
Social Worker
Support Groups
New London County
When:    4th  Tuesday monthly
Time:      6:30 to 7:30 p.m.
Where:    Mariner Healthcare
Center of Bridebrook
Contact:      Laura Kokoska
Phone:         860-691-1499
Participants: Free support group for patients, family, and friends.
When:   Monthly, vary call to register
Time:     6:00 - 7:30pm
Where:  263 Farmington Avenue
               Dowling North Building, 2nd Floor
               Farmington, CT 06030-6204
Contact:    Bonnie Hennig, MSW, LCSW
                  Univ of CT Health Center HD Program
Phone:      1-800-679-4441
Participants: Free support group for caregivers (light dinner served)
When:   lst Wednesday of each month
Time:    6:30-7:30pm
Where:  Waterbury Hospital/North 2 Classroom
              64 Robbins Street,
             Waterbury, CT 06708
Contact:    Jackie Quirici
Phone:       203-755-0637
Email:  or
                   Audrey Sperring
Participants: Patients, families, friends, caregivers and people at risk
Hartford County
Am not sure if this new group is still in existence.
Contact: Marianne Amato
Phone:    860-289-9571
Groups in Nearby States:
Massachusetts Group
Accessible to Connecticut families
When:      3rd  Wednesday of  month
Time:        6:30 to 8:00 p.m.
Where:     Bay State Medical Center
Contact:     Dr. Amy Fowler
Phone:        413-732-7419
Rhode Island
Accessible to Connecticut families
When:     1st Tuesday of  month
Time:       7:00 to 9:00 p.m.
Where     Rhode Island Hospital
Contact:  Kim Emond
Phone:     1-401-231-7271
Participants: Accessible for some Conecticut people. Free support group for patients, family, and friends.
Special Notices
for current events that may be taking place in this area.
The Huntington's Disease Program 
The University of Connecticut Health Center
Hartford Hospital's Conklin Building
Seymour Street
Hartford, CT
(see website for driving directions)
Phone:   860-545-2637
Hours:   8:30 am - 5:00 pm
Days:    Monday - Friday
On Call 24 hour emergency access

FEES:  There is no charge to Connecticut
residents/families for these services.
The center provides care and treatment
to HD patients and their families. Persons
eligible include Connecticut residents
who have, or are at risk for, Huntington's
Disease.  We will provide ongoing education
to professionals and organizations in the State
of Connecticut regarding HD and help individuals and their families network with available resources in the state. 
The program is involved with basic neuroscience research to elucidate the cause and treatment of Huntington's Disease.
Neuropsychiatrist, Medical Director
Neuropsychologist, Scientific Director
Phone:  860-545-2637
Phone:  860-545-2637
Clinical Social Worker
Phone: 860-545-2637
Nurse Clinician
Certified Genetic Counselor
Administrative Assistant, Community Liaison
Other Physicians
Need your experience
Genetic Testing
The University of Connecticut Health Center
Hartford Hospital's Conklin Building Suite 401
80 Seymour Street
Hartford, CT 06102
Contact:   MaryJane Fitzpatrick, A.P.R.N.
Phone:      860-545-2637
Yale University School of Medicine
Department of Genetics
333 Cedar Avenue
PO Box 208005
New Haven, CT 06520
Contact:   Miriam DiMaio, MSW
Phone:      203-785-2661
Fax:           203-785-7673
Have An Emergency?
Dial 2-1-1 or
State Resources
Connecticut Homepage
ACLF's/Nursing Homes
Need your input for those experienced in HD
Connecticut Long Term Care Ombudsman
Department on Aging
25 Sigourney Street - 10th Floor
Hartford, CT 06106-5033
Phone: (860) 424-5200 ext. 5221
FAX:    (860) 424-4966
Intermediate Care Facilities are designed for individuals with chronic conditions who are unable to live independently, but do not need constant intensive care. They provide supportive care and nursing supervision under medical direction twenty-four hours per day, but not continuous nursing care.
Area on Aging
Assistive Technology
Assistive Technology - Assistive Technology consists of devices or services that help people to achieve greater independence and to enhance the quality of their lives.
Department of Social Services, BRS
25 Sigourney St. 11th Floor
Hartford, CT 06106
Project Director: John M Ficarro, Ph. D.
Phone: 860.424.4881
Phone: 800.537.2549 (In State)
Fax: 860.424.4850
Centers for Independent Living - are single points of access to services for people with disabilities.
Community Based Services Program - provides assessment, coordination and payment for services for persons age 18-64 who have physical or mental disabilities and who need supportive services to live independently in the community.
Personal Care Assistance Waiver Program- enables people with disabilities to employ personal care attendants to help with daily activities such as bathing, dressing, transfer, and toileting, as well as home chores, shopping, laundry, and other activities that are essential for independence. The Medicaid Waiver program allows a person with limitations in at least two activities of daily living, and with a monthly income restriction, to be eligible for Medicaid.
ConnPACE - service that helps eligible senior citizens and people with disabilities [age 18 and older] afford the cost of most prescription medicines.
Estate Planning
Guardianship For Minors
Your Rights to Make Health Care Decisions brochure from the office of the Connecticut Attorney General
Community Based Services Program-provides assessment, coordination and payment for services for persons age 18-64 who have physical or mental disabilities and who need supportive services to live independently in the community.
Family Support Grant -subsidies of up to $3000/year to defray the extraordinary expenses of parents or other eligible family members who are caring for a dependent child age 0-18 with a developmental disability.
Hospitals-Free Bed Funds
Connecticut Consumer's Guide To Getting and 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.
Phone numbers for below. When calling, ask for information on "Connecticut Partnership" LTC policies
Listing of company policies approved In Connecticut
Public Act No. 00-177  Juvenile Court now has the authority to provide services for youths who not yet reached the "age of majority" (18) who are beyond their parents control, have run away from home, or who fail to go to school.
Jail Diversion Programs - provide court-based services to persons with psychiatric and co-occurring disorders who are arrested on minor offenses. The primary function of the program is to facilitate access to appropriate treatment services by providing assessment, referral, and linkage to community mental health services.
Katie Beckett Waiver -enables severely disabled children and adults to be cared for at home and be eligible for Medicaid based on the individual’s income and assets alone.
Mental Health
Advocacy-DMHAS works frequently with a variety of advocacy groups to ensure that its customers are provided efficient mental health and addiction services that foster self-sufficiency, dignity and respect.
Services-services are organized on a regional level, providing easy access, responsive emergency care, continuity of care between different agencies, and client/family/advocate involvement.
Finding Services- to find services in your area click on the appropriate region on the map. If you are not sure of your region, locate your town and follow the link to  the corresponding region.  

OBRA (Nursing Homes) - This program

oversees the screening, evaluation and monitoring of persons with a serious mental illness who are applying to, or residing in, Connecticut nursing homes.   The goal of the program is to make sure that persons with serious mental illnesses are receiving services in the most appropriate setting. 


Shelter Plus Care - a HUD-funded rental assistance program designed to provide housing and supportive services to an estimated 650 persons per year who are homeless and disabled. 


Suicide Resources

Young Adult Services

The Connecticut Mental Health Association
The Connecticut Mental Health Association is dedicated to the promotion of mental health, prevention of mental illness, and improved care and treatment of persons with mental illness.               Ph: 800-842-1501 or 860-529-1970


Vital Records
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.
Connecticut United Ways- explore community solutions, learn about health and human service issues. If you are unsure which United Way covers your area, select your town from the drop down list.
United Way-Search By Zip Code will provide you with information on the United Way in your area. 
Other Resources
 "Adapting Motor Vehicles For People With Disabilities" – a National Highway Traffic Safety Administration’s brochure
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.
Locate Missing Records- families who have become responsible for another's affairs may need to request copies of lost records needed to apply for benefits like Medicare or Medicaid, to make insurance claims, or to manage affairs. Resources in USA, UK and Canada.
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.