Huntington's Disease Support Information


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Convention Scholarship Fund
State HD Support
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Washington State
Pennsylvania~Delaware Valley
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Wyoming Non-HD Specific Caregiver Support
Miscellaneous State Resources
Other Resources
Click on map for Colorado's yellow pages
                              State Flag Colorado
Rocky Mountain HDSA Chapter
Serving Colorado, Montana ,Western  Nebraska New Mexico , Nevada , Utah  and Wyoming
Rebecca Saltman
6545 W. 44th Avenue, #1
Wheat Ridge, CO 80033
HDSA Region
Beverly Graham
7823 Ramart Way
Littleton, CO. 80125
Social Worker
LeAnn Hansen, LCSW 
8:00-5:00 Monday-Friday
The social worker from the Rocky Mountain Chapter Support line will answer and respond to all calls for support and information.There are monthly support groups and those from out of town are welcome to attend.
Special Notices
Check HDSA's  National Events Calendar for current events in the area covered by this Chapter.
Support Groups
See Montana , Nevada & New Mexico for peer led support meetings
Denver, Co (Englewood)
When:         4th Wednesday monthly
Time:           7:00 pm to 9:00 pm
Location:    Johnson Adult Day Program
                      3444 S Emerson Street 
                      Englewood, CO
Contact:     LeAnn Hansen, LCSW 
Phone:        1-303-321-5503 

Colorado Springs, CO
When:        Quarterly  on 1st Wednesdays
                     HDSA Rocky Mountain Chapter
                     Southern Colorado Group
Location:   Memorial Hospital Heart Center
                     Conference Rm #3631
                     Colorado Springs
Contact:    Robyn Colbert, MSW       

Phone:       1-303-321-5503 
Northern Coloroda [Ft. Collins]
When:        3rd Thursday of each month
Time:          6:30 - 7:30 PM
Where:      Adriel Hills Clubhouse 
                     County Rd 11 & Mountain Vista Dr
                     Ft. Collins, CO
Contact:    Bobbie Beach, NCC    

Phone:       1-303-321-5503
Western Slope (Grand Junction)
When:      Last Tuesday every month
                   No meeting in December
Time:        6:30 p.m.- 8:00 p.m
Where:     United Methodist Church 
                   522 White Ave.
                   Grand Junction, CO
Contact:    Diane Dawson
Phone:        1-303-321-5503
Center of Excellence/Genetics
HDSA Center of Excellence
The Colorado Neurological Institute
Movement Disorders
Swedish Medical Plaza II
701 East Hampden Avenue,
Suite 530
Englewood, Colorado 80110-2776
Phone:     1-303-788-4600
Fax:          1-303-788-8854
Director:     Dr. Lauren Seeberger, M.D., NPF Director Assistant:   Sherrie Montellano
Contact:      Kim Martin, R.N.,
                      NPF Patient Services Coordinator
Phone:        1-303-788-4600
FAX:           1-303-788-8854
Social Worker/ Family Services Coordinator
Contact:  LeAnn Hansen, MSW
Phone:     1-720-371-5806
Services:  CNI provides the following services and resources:
  • Interdisciplinary team of professionals providing specialized evaluation and
  • treatment for HD
  • Genetic testing and counseling
  • Clinical research trials through the Huntington Study Group and CNI research department
  • HD Support Group
  • Support Line - telephone support and information
  • Education programs for  patients and families
  •  CNI Travel Assistance Fund  for patients with financial difficulties
  • Low-cost accommodations  for out-of-town patients and families
Other Physician/Clinics
University of Colorado
4200 East Ninth Avenue
Box 183
Denver, CO 80262
Dr. Maureen Leehey
Phone: (303) 315-7517
Genetic Testing [besides the CoE]
Kaiser Permanente
Department of Perinatology/Genetics
2045 Franklin Street
Denver, CO 80205
Contact: Carol Haverkamp, RN
Phone:    (303) 861-3538
(Services for Kaiser members only)

University of Colorado
HD Testing Program
4200 East Ninth Avenue
Box 183
Denver, CO 80262
Contact:  Christi Markey,
Genetic Counselor
Phone:     (303) 315-3601
Fax:          (303) 315-758
Long Term Care
Colorado Long Term Care Ombudsman
The Legal Center
455 Sherman St.
Denver, CO. 80203
Phone: 303-722-0300 or 1-800-288-1376
HD Experienced
Terrace Heights Care Center
2121 Mesa Drive
Boulder, Colorado 80304
Contact Person: Jeanne Rott, M.S.
Phone: 303-442-4037
Admissions: 303-859-9483
Fax: 303-442-5430
State Resources
Colorado Homepage
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.
Colorado Consumer's Guide To Getting and Keeping Health Insurance PDF Document. 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.