Huntington's Disease Support Information


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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 Iowa's yellow pages
Iowa State Flag    Iowa
HDSA Chapter
Help Line
Karen Brown
600 North 21st Street,
Clarinda, IA  51632
866-248-HDIA [4342]
 "The Iowa Connection"
Call to be put on mailing list.
Chapter Quick Connects:
Research Opportunities-projects and trials currently enrolling subjects at the University of Iowa Hospitals and Clinic.
Support Group Meetings
This group is no longer meeting.  Call the Chapter for updates. 

Des Moines
When:      4th Friday of  month
Time:        7:30 pm
Where:     Iowa LutheranHospital 
                   Conference room A or 1 
                   700 East University Ave. 
                   Des Moines, Iowa 50316
Contact:   Karen Brown
Phone:      866-248-4243
or               712-523-2291
Participants: Anyone that is interested! Will sometimes have guest speakers, or training  video, and group discussions.
Iowa City
Area Served: Iowa City Area
When:       4th Sunday of  month
Time:         1:00-3:00pm
Where:      Adult Outpatient Clinic 
Room 1911,
                    John Pappajohn Pavilion 
                    University of Iowa
                    Hospitals and Clinics
Contact:   Anne Lesserman, MSW, LISW
Phone:       319-353-4307
When:        4th Monday of mo.
Time:          7:00 pm
Where:       St. Johns' Catholic Church
Contact:     Diana
Phone:        712-523-2885
Center of Excellence
The University of Iowa
Iowa City, IA, 52242
For Below Services & Info
Contact:       Anne Lesserman, MSW, LISW
Telephone:   (319) 353-4307
Fax              (319) 353-3003
Phone:          1-800-777-8442 x34307 
Hours:           24/7
Services:        Referrals and resources
Center Hours
Monday, Wednesday and Fridays
Time:   9-6PM
Clinic Hours: 2nd Tuesday of month
Phone:   (319) 353-4307
Fax: (319) 353-3003
Once a month, neurologist Henry Paulson, M.D., Ph.D., will answer your questions related to Huntingtons disease. Please e-mail questions to
The team approach used at the UIHC inte-grates a full range of HD services. A routine visit allows our professionals to assess the three primary areas affected by HD.  A  motor assessment, completed by a neurologist,  will evaluate movement  (chorea),  posturing,  rigidity, and  balance. A psychologist will evaluate functional and behavioral aspects as well as current mood and level of functioning in day-to-day activities.  A cognitive assess-ment is then done to determine strengths and weakness in thinking processes. 
We also assess what services patients
and families may need (speech therapy, genetic counseling, etc.) and ensure that these are conveniently provided. In addition to providing office visits and follow-up are, the clinic serves as a resource for anyone needing HD information
Assistance with SSDI procedures,
referrals to statewide agencies
Contact:  Anne Leserman, M.S.W., L.I.S.W.
Hours:     MWF: 9am-6pm

Family counseling, work with HD
and youth groups

In-service  training on HD care is 
offered on an as needed basis
HD Center of Excellence Personnel:
Neuropsychologist and Co-Director
Program Coordinator
Listing of Center's Staff
Other Medical
Genetic Testing Facilities
University of Iowa
Regional Genetic Consultation Service
200 Hawkins Drive-2604 JCP
Iowa City, IA 52242-1083
Contact:    Catherine Evers, RN, MA,
                     Genetic Nurse Consultant
Phone:        1-319-356-1160
Fax:             1-319-356-3347
Genetic Consultants
Cathy Evers, RN
Janet Williams, PhD
Ann Muilenburg, BSN, MA
Physicians-Other Cities
HD Experienced  Need your input
Movement Disorder Division
200 Hawkins Drive-2100 RCP;
Iowa City, IA 52242
Appointments:  319-356-8734
Fax: 319-356-4505
Contact:   Ergun Y. Uc, MD
Phone:      319-356-8754
Clinical Outreach Services
General Neurology -These clinics offer evaluation, consultation, and treatment for patients with neurological disorders.

Grinnell Regional Medical Center
210 Fourth Avenue
Grinnell, IA  50112
Phone:          641-236-2925
2nd, 4th Tuesday, Every Thursday
Physician:    Edward Aul
Knoxville Area Community Hospital
1002 S. Lincoln St.
Knoxville, IA  50138
Phone:           319-356-2571
Schedule:      Tuesday (varies)
Physician:     Edward Aul
Have An Emergency?
Dial 2-1-1 or visit  Iowa's 2-1-1 Connection
Iowa State Resources
>Iowa  Homepage
ACLF/Nursing Homes
HD Experienced
Meadow Lawn Nursing Center
4656 W. Kimberly Road
Davenport, IA 52806
State LTC Ombudsman
Iowa Department of Elder Affairs
Clemens Buiding
200 10th Street, 3rd Floor
Des Moines, IA 50309-3609
Phone:  515-281-8643
Fax:      515-281-4036
Sometimes applicable to disabled adults.
Assisted Living, Elder Group Homes, and Elder Family Homes-Iowa has over 150 certified assisted living programs, and many others currently in development.
Senior Living Program- Funded by the Senior Living Trust, the goal of this program improve upon the current system of long-term care.
Assistive Technologies
Assistive Technology
Also see the CoE  Patient resources
Iowa Family Caregiver Respite-allowing caregivers the time off from providing care that they need
-Assistance in locating local services to help you care for your loved one
Medicaid HCBS Brain Injury Waiver [in MS Word format]- provides service funding and individualized supports to maintain eligible consumers in their own homes or communities who would otherwise require care in a medical institution. Provision of these services must be cost effective. Waiver services are individualized to meet the needs of each consumer. The following services are available:
    Adult Day Care
    Behavioral Programming
    Case Management
    Consumer Directed Attendant Care
    Family Counseling and Training
    Home and Vehicle Modifications
    Interim Medical Monitoring and Treatment
    Personal Emergency Response System
    Prevocational Services
    Specialized Medical Equipment
    Supported Community Living
    Supported Employment
Substitute Decision Making Task Force-
DEA formed the Substitute Decsion Makers Task Force in response to the concerns of health care and human services providers, attorneys, advocates, and educators about the absence or inadequacy in Iowa of decision-making mechanisms. For more information contact Nicki Stajcar at 515-242-3320
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.
Disability Rights Guide in PDF format
Client Assistance Program 1-800-652-4298 - designed to help people who are seeking or receiving services from an agency funded by the Rehabilitation Act. Information is provided on all available services under the Act and under Title I of the Americans with Disabilities Act to any individual with disabilities in Iowa.
Independent Living Links
Division of Persons with Disabilities
Iowa Department of Human Rights
Lucas State Office Building
321 E. 12th Street
Des Moines, Iowa 50319
Jill Avery-Administrator
(515) 242-6172
(888) 219-0471(V/TTY)
Estate Planning
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.
Iowa Consumer's Guide To Getting & Keeping Health Insurance  - 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.
Medicaid -  515-281-8621
Disability Determination
   Basic Program Information
Health Care Access 
515 242-6383 or 800 308-5986
Services: The Bureau of Health Care Access advocates for quality health care delivery systems for all Iowans and provides information, referrals, education, grant opportunities, technical assistance, and planning for Iowa communities.
Supplemental Security Income  1- 800-972-2017
Services: The Unit of Health Support is primarily responsible for establishing eligibility policy and procedures for various medical coverage groups within the Division of Financial, Health and Work Supports. The policy and procedures are conveyed to local Department of Human Services (DHS) staff through policy manuals, interpretations, and training.
  • Medical assistance is available to low income individuals who meet applicable program requirements.
  • Medical assistance is available to most people who qualify for Supplemental Security Income (SSI) for the aged, blind, or disabled and those who meet SSI requirements except for excess income or resources.
    Insurance Iowa Consumer Guide for 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
    Criminal & Juvenile Justice Planning also administers federal and state grant programs to fund local and state projects to provide services to juvenile offenders and otherwise improve Iowa's juvenile justice system.
    The Iowa Bar Association offers a lawyer referral service. The service can supply you the name or names of lawyers who are willing to consult and advise you at a discounted rate of no more than $25 for the first 30 minutes. If further legal services on your behalf are necessary, you may arrange for them at that time, if you wish. The service is available on-line at the Iowa Bar Association Lawyer Referral page
    Medical Assistance
    Mental Health
    -Senior Living Program- improve upon the 
     current system of long-term care
    -Senior Health Insurance Information Program
    Slow to load! Call DMV for a copy!
    Iowa Veteran Affairs (515) 242-5659
    Services: We are an office of advocacy for veterans
    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.
    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.