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HDF
HDSA
HDSA News
Links To Information On Huntington's Disease
"The soul would have no rainbow if the eyes had no tears."
~Indian proverb |
| Today there are hundreds of locations where HD information can be accessed, unlike 8 to 10 years ago. Families from around the world are still struggling, daily, to find information to help them live with this devastating disease. This page contains several links to very resourceful information on Huntington's Disease.
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Internet Support Groups
Need an answer to a question right now....or at 3 AM? Join one of the on-line Huntington's Disease groups!
HDSA Chapters, Support Groups, Centers of Excellence and other resources listed state-by-state. This information is currently linked to another site but will all be moved here as time permits. |
This site contains 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. |
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2nd Edition On-Line copy. A must for every physician treating a person with HD and their family!
Provides people living with HD excellent resources which address the various aspects of behavior in someone with Huntington's Disease. Includes tips on how to help
With Behavioural Disturbances in HD by Pete Ellis, Understanding Challenging Behavioral in HD by Julie Snowden, Understanding Behavioral Changes by Dr. Edmond Chiu and Behavioral Changes In HD~A 2001 Study |
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Genetic Testing
HD Genetic Testing - Information on Genetic Testing, Testing in HD, Prenatal, Preimplantation, Testing Children, Risks, Personal Stories, Discrimination in the Workforce, Insurance Issues. |
HDSA National Youth Alliance (NYA) - Huntington's Disease National Youth Association (NYA) is a group of young people, ages 9 through 29, living with HD. Find out how you can join or help this organization
This site does not contain a lot of technical data, instead mostly provides resources for young people to learn a little bit about Huntington's Disease, Genetics and lots of resources to help with life, school and college plus links to fun and interesting things to do! For those who are budding scientists, or doing papers on genetic diseases in school, you might want to check out the Genes & Genetics or Science sections! |
Very moving and touching portrayal of how the devastation of Huntington's Disease affects the lives of our young children and adults living with the disease through a Question and Answer format...plus more!
Few Topics-Fast Connection
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Information on the Huntington's Disease Society of America (HDSA), including website, contacts, link to The Marker HDSA'smagazine, how to get on HDSA's mailing list and how you can help Huntington's Disease through your donations.
A non-profit, basic-science organization dedicated to the cure of genetic disease. 100% of all publicly donated funds is directed to the support of biomedical research. HDF focuses on Huntington's disease.
Huntington's Disease Advocacy Center (HDAC) click here-> HDAC website
-was started to help family members affected by Huntington's Disease find answers to the many questions that need to be answered. This includes caregivers, those at risk, and those that have tested positive for HD.
Fast Connection
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A blog, short for 'weblog', is a website that contains a log of messages. HD Blog will focus on news that relates to Huntington's Disease research.
Fast Connection
Jerry Lampson's HD Lighthouse has had over 1 Million visits since it's inception. Among the many things HDL offers is current information on Scientific findings in HD, clinical trials, resourceful documents on Huntington's Disease and a message board.
Stanford University
HOPES is a team of faculty and undergraduate students at Stanford University dedicated to making scientific information about Huntington's Disease (HD) more readily accessible to the public.
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Locate A Neurologist
MDLocator is an easy-to-use, comprehensive neurology physician locator system. Person-alize your search by zip code, specialist and/or by treatment. Click -> MDLocatorŽ
Movement disorder clinics
The Parkinson Foundation has an Excellent Website to help locate a Movement disorder clinic in any state by clicking on the state. Most clinics that are experienced in PD have someone knowledgeable in HD. Click ->
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A list started by a physician on Hunt-Dis for you to input your experience with medications, over-the-counter products, therapies, etc. Those living with HD know what has been effective and what hasn't in helping a loved one with HD.
Fast Connection
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Jean Miller's Other HD Related Websites |
Advocacy issues in HD, Map of Congress, how to contact your elected officials, Bill in Congress and more. Donations; Where to make them for HD, how to make them through your employer. Media: Information for the Press, Media Guide
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.
Under construction [need help]. Information addressing care outside the home available and/or necessary in Huntington's Disease care.
Where available shows links to an individual HDSA Chapter, Affiliate, Support Group or Center of Excellence (CoE) website and/or newsletter. You might want to check them out periodically, as most have some excellent updates or information on Huntington's Disease!
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.
Convention Scholarship FundA nonprofit group dedicated to sending as many deserving members from on-line HD support groups to an HDSA National Convention. Previously called the Hunt-Dis Convention scholarship fund this fund was renamed the Louise Wilkinson Huntington's Disease Convention Scholarship Fund, in honor of a special lady and HD Hero.
Creating HD Awareness PostersHeart wrenching pictures which can be used as posters or handouts to help promote awareness to Huntington's Disease. These were created by Sue Leck and Jean Miller using pictures of people, young and old, living with HD. Please feel free use them at work, school, etc.! These posters are stored on Sue Leck's Webshot album.
Definition 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.
DrugsLook 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.
Fix ItUnfortunately out of necessity or lack of finances, HD caregivers are stuck with the task of fixing things that fall apart! Most of us don't want to know how....but sometimes you just gotta fix it yourself. Under How Stuff Works, learn about home repairs, household stuff, electronic thingamajigs, cars, computers and tons more including college financial aids, credit and taxes!
Want to search the web each day for new developments on HD? Check out all of these links on a daily basis!
This site was designed to have one place to will input information specifically for caregivers of loved ones with Huntington's Disease. However, it wasn't used much so information is being moved to other sites as time permits and this site will be deleted when the transfers are complete.
Links to all of the Centers of Excellences and genetic testing places that DO have a website from the HD Support Information website all on this page.
The decision to be tested for Huntington's Disease is an extremely difficult and soul-wrenching one to make. The information on this site is a collection of articles, stories and information for people considering being tested for Huntington's Disease and their families.
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! |
HD Research Papers
This site has been established for the sole purpose of storing Huntington's Disease papers to share that can't be emailed as an attachment. This site is NOT linked to any of my other sites. For current information on HD research, check out the HDL Website (click here)
My primary website replacing many of the original pages listed under Endoflifecare sites. This is where new pages or topics are added.
Although there are three standard logo's used for Huntington's Disease both in the USA and Internationally, several talented people living with HD have created GIF's or JPG logo's they want to share with others. Please feel free to use any of these in your HD literature, personal stationery, even HTML emails! These will be moved to another location.
These Memorial Quilts are a powerful and beautiful reminder of the terrible impact of Huntington's Disease in all of our lives. See pictures or learn how you can submit a square. The Huntington's Disease Memorial Quilts are available for loan to any HDSA Chapter, Support Group, Center of Excellence or HD family supporting an HD awareness, educational or fund raiser event. They make a very visible statement to those attending your event.
My first HD dedicated website under the Endoflifecare name providing information on HD, State by State HD support and other information. This information is slowly being moved to my huntingtdisease sites. As pages are moved, a link to the new site will be shown.
Huntington's Disease SymptomsIt 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.
InsuranceThere 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.
Information from this site, which I can no longer access, that is directly related to JHD is being moved to the new site. Other information such as symptoms, medications, etc. has been or is being moved to stand-alone sites for those subjects.
The first Time, Inc. HD Awareness ad for HDSA appeared in Time publications in 2003 and featured my daughter. In 2004 Shana Martin and her Mom are featured.
Our Final Journey My very first website dealing with end of life issues which people seldom talk about until they have a need. This site is a wealth of information on Assistive Technology, Divorce Issues, drugs and medications, forms, employment issues, estate planning, caregiver resources, family and patient resources, financial aids, insurance, legal issues, long term care, symptom support, feeding tube and end of life care, hospice, saying good-byes, the dying experience, funeral planning, grief and sorrow.
Looking for something quickly? Link to a few dozen internet search engines that may help you find it!
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. |
HDSA Publications For Sale:
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HD Fact Sheets from HDA-UK click here - FAQ sheets available in PDF format on General Info on HD, Predictive Testing, Talking with Children, Information for Teenagers, Eating and Swallowing Difficulties, Diet, Dental Care, Commun-ication Skills, Behavioral Problems, Sexual Problems, HD and the Law, Driving, Seating Equipment. |
Over 1,000 cards for almost any occassion with the message "Help CURE HD" on each. These cards a free for any HD fund raising event. You can order the CD with the cards on the Hunt-Dis HD Convention Scholarship website.
Try one ;-)
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