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Index~HD Search
Click
on map for Illinois yellow pages
Illinois HDSA Chapter |
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Chapter Contact Information:
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President:
Email:
Address:
Phone
Website
Newsletter |
P.O. Box 8383
Rolling Meadows, Il. 60008
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HDSA Regional Representative:
Contact:
Email:
Address:
Toll Free:
Phone:
Fax: |
Leigh Peterson
459 63rd. Ave NE,
Fridley, MN 55432
1-800-865-4342
763-502-1407
763-502-1408 |
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Chapter's Nursing Home In-Service Trainer
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Clarence Wiese
630-443-9876 |
Special Notices
for current events that may be taking place
in this area.
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Support Groups
The Illinois HDSA Chapter would like to establish support groups
throughout the Metropolitan area. If you are interested in hosting a support group in your area, please call the chapter office, 630-443-9876 . |
Young Adults/NYA
When:
Where:
Website:
Contact:
Email:
Phone:
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Varies
Call Chapter for details
Sue Leck
630-443-9876
All young adults living with HD ages 9 through 29. |
Cook County
When:
Time:
Where:
Phone:
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Call Chapter for dates
12 p.m.
Cook County Hospital
Chicago
630-443-9876
All family and professionals with an interest in HD. |
Lake Zurich & Lansing
Call chapter for times and dates
Northlake
When:
Time:
Where:
Phone:
Participants |
3rd Thursday of the month
Call Chapter for time.
Northlake Lutheran Church
112 N. Wolf Road
Northlake
630-443-9876
All family and professionals with an interest in HD. |
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Peoria
When:
Time:
Where:
Phone:
Participants |
Call Chapter for dates
2 PM to 4 PM
St. Francis Hospital
530 NE Glen Oak
7th Floor Boardroom
Peoria, Ill
630-443-9876
All family and professionals with an interest in HD. |
Quincy
When:
Time:
Where:
Phone:
Participants |
Varies-Call for Information
2-4 PM
Blessing Hospital Conf Rm G
1400 Broadway
Quincy
IL
630-443-9876
All family and professionals with an interest in HD. |
Rockford
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Call Chapter for dates
2:00 P.M. to 4 P.M
St. Anthony's Hosp
1st Floor Auditorium
5666 E. State
Rockford
630-443-9876
All family and professionals with an interest in HD. |
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HDSA Center of Excellence
Genetics & Other Physicians |
HDSA Center of Excellence
at
Rush Movement Disorder Clinic
Rush Professional Office Building,
1725 W. Harrison St., Suite 755
Chicago,
Il. 60612-3824
Appointments: 312- 563-2030.
Patients may be seen at our main offices on the Rush campus or at
our satellite offices in Skokie and Oak Park.
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M-F 8 a.m.- 4:30 p.m.
312-563-2030
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CoE Director
Email:
Office |
Kathleen M. Shannon, M.D.
Dept. of Neurological Sciences
312-942-4500 |
Dr. Shannon is a neurologist who specializes in Huntington's Disease.
Cook County Hospital
Fantus Clinic, Dept. of Psychiatry
621 S. Winchester
Chicago, Il 60612-9985
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M-F 8 am - 4PM
312-864-6104
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Dr. Steve Clingerman, Ph.D.
Neuropsychology's Coordinator
312-633-8632 |
Dr. Clingerman is also the Chairperson of Family Services for the Illinois HDSA Chapter Board
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Genetic Testing
These center use the HDSA official protocol for genetic testing of HD.
Carle Clinic
Medical Genetics/AMS 5
605 West University
Avenue
Urbana, Ill 61801
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Judy Miller, MS, CGC
217-383-5084
217-383-4681 |
Rush Presbyterian
St. Luke's Medical Center
1653 West Congress Parkway
Chicago,
IL 60612
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Dr. Kathleen Shannon
312-942-4500
312-942-2380 |
Advocate Medical Group
Lutheran
General Perinatal Center
Parkside Center
1875 Dempster Street, Suite 340
Park Ridge, IL 60068
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Seth Marcus, Deborah Rita, or Carol Booth
847-723-7705
847-723-2290 |
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HD Experienced
Need your input
Illinois Department On Aging
421 East Capitol Avenue Suite 100
Springfield,
IL 62701-1789
Phone: (217) 785-3143
Veterans
Located in Quincy, Anna, LaSalle, and Manteno. |
Assisted Living
Day Care
Long Term Care
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Have An Emergency?
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State Resources
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Advocacy/State Contact Information:
Governor
Lt. Governor
Legislature
Illinois Federal
Agencies, Boards, & Commissions
County Government
State Telephone Directory
Abuse
Adults
Choices for Care - All
persons age 60 and older who are seeking admission to a long term care facility must be informed of all care options prior
to admission.
Community Care Programhelps senior citizens age 60 years old or older who might otherwise need nursing home care, to remain in their own
homes by providing in-home and community-based services.
Assistive Technology
Illinois Assistive Technology Project (IATP)
1 West Old State Capitol Plaza, Suite 100
Springfield,
IL 62701
Phone/TTY: 1-800-852-5110
Fax: 217-522-8067
Web
address: http://www.iltech.org
List of Devices for Loan
Special Education Assistive Technology (SEAT)
Center at Illinois State University
Campus Box 5910, Fairchild Hall 324
Normal, IL
61790-5910
Phone: 309-438-7811
Fax: 309-438-2211
Web
address: http://www.coe.ilstu.edu/seat
Great Lakes Disability and Business Technical Assistance Center is a part of the University of Illinois at Chicago. The center is one of 10 regional centers funded by the National Institute
on Disability and Rehabilitation Research (NIDRR), a division of the U.S. Department of Education. Its purpose is to provide
technical assistance and training to businesses and persons regarding the Americans with Disabilities Act (ADA) of 1990.
Caregiving
Illinois Family Caregiver Support Programdefines a family caregiver as an adult family member or another individual who is an informal provider of in-home and
community care to an older individual Grandparents and relative caregivers of children not more than eighteen years of age
and those individuals who are affected by mental retardation or who have developmental disabilities.
Residential repair and renovation services include adaptations to homes that can make it easier and safer to carry out
activities such as bathing, cooking etc. to improve its overall safety and condition. Available in some Illinois communities.
Children
Disabilities
Client Assistance Program -helps people with disabilities receive quality services by advocating for their interests
and helping them identify resources, understand procedures, resolve problems, and protect their rights in the rehabilitation
process, employment, and home services.
Disability Determination Services - determines the eligibility of
people to receive benefits from Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI). We provide services to 56 offices located in communities throughout the state.
To find the nearest Social Security office, dial 1-800/772-1213 and tell the service representative your city, state and zip
code.
Equip for Equality - a private not-for profit legal and advocacy organization designated to operate the federally
mandated protection and advocacy system to safeguard the rights of people with physical and mental disabilities including
developmental disabilities and mental illnesses.
Independent Living -
supports Centers for Independent Living (CILs) statewide that provide accessible programs and services to all people with
disabilities.
Estate Planning
Illinois Guardianship and Advocacy Commission an executive state agency created to safeguard the rights of persons with disabilities by providing legal representation,
investigating complaints of rights violations and providing state guardianship for Illinois' population with disabilities.
Advance Directives
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Estate Planning continued
Financial
Circuit Breaker - A rebate of a percentage of property taxes paid by persons with disabilities.
Low Income Home Energy Assistance Program (LIHEAP) is available to
give assistance in paying gas and electric bills. Income levels must be met and also sign up dates. For more information call
Ceda at 212-795-8800
Health
Mediation to Medicare Beneficiaries to resolve a quality of care complaint under Medicare. This is at no direct cost
to you. It is a dialogue between you and your doctor or hospital, facilitated by an impartial third person (the mediator).
Insurance
Medicaid/Medicare
Legal
Central Intake: 1-866-274-8023
Outside Illinois: 1-708-338-7500
LAS
attorneys provide needed assistance to eligible
children and adults with disabilities in a variety of
settings: mental health facilities, residential
programs,
community placements, and nursing homes.
Issues
addressed include, but are not limited to:
admission
and discharge from hospitalization, adequate
treatment,
refusal of unwanted services, and confidentiality
of mental health records.
Mental Health
Veterans 1-800-243-5377
Veterans Benefit Assistance
Vital Statistics
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Miscellaneous State Support |
Patient Advocacy Foundation State Locator
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! |
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.
GovBenefits.gov 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.
Illinois Consumer's Guide To Getting & 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.
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.
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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
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 DefinitionsAn 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.
Insurance
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. |
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