Huntington's Disease Advocacy Center - Web sites that address issues of interest to HD Families.

The following is a list of links that we've found or that were shared with us that might possibly be of interest to HD families. We are also working on a more comprehensive HD Services page that is expected to be availabe in 2007.

Huntington's Disease Societies & Associations

Asociacion Argentina de Huntington

Somos un grupo de personas (pacientes, familiares y doctores) afectadas por HD, nucleados en el pais de Argentina. Nuestro objetivo es poder ayudarnos mutuamente para poder sobrellevar lo mejor posible está enfermedad e impulsar la investigación hasta conseguir la anciada cura.

Translation: We are a group of people (patients, family members and doctors) affected by HD. We live in Argentina. Our aim is to help us each other live with the disease as better as possible and to stimulate research so that we can find the desired cure.

Australian Huntington's Disease Association (National)

Huntington's Australia is the website of the Australian Huntington's Disease Association (National). It provides information about the Association, and acts as an entry to the websites of the state Huntington's Disease associations. From here you can get to the State Associations Web Sites for Queensland, New South Wales & Australian Capital Territory, Victoria, Tasmania, South Australia & Northern Territory, and Western Australia

HD Australia

This is a community run resource for all Australians affected by Huntington's Disease.
[Links, HD Information]

The Hereditary Disease Foundation

This is the wonderful web site of a foundation dedicated to curing Huntington's Disease. You can find a description of the protocols involved in testing for those at risk and not symptomatic. Research news can be found here. For those interested in the scientific details of the ongoing research, go to the section "Recommended Reading" and click on workshop reports.

Huntington's Disease Association (West Lancashire)

This is the Web site of the North West Lancashire branch of the Huntington's Disease Association.

Huntington's Disease Association - Canada

The Huntington Society of Canada (HSC) is a national network of volunteers and professionals. Together, we're working to build a brighter tomorrow for everyone whose life is touched by HD.

Huntington's Disease Association - United Kingdom

HDA Online is the Web site of the UK's Huntington's Disease Association, which offers news and information about Huntington's Disease for people affected, their families & friends and health care professionals.

Huntington's Disease Association of Belgium

Huntington's Disease Association of Ireland

HDAI provides consultation, information and individualized support to those diagnosed with Huntington's disease, their families and their health care team.

Huntington's Disease Association of Texas

The Huntington’s Disease Association of Texas serves HD persons and their families in the Austin and Central Texas area.

Huntington's Disease Society of America

The Huntington’s Disease Society of America(HDSA) is dedicated to finding a cure for Huntington’s Disease (HD) while providing support and services for those living with HD and their families. HDSA promotes and supports both clinical and basic HD research, aids families in coping with the multi-faceted problems presented by HD and educates the families, the public and health care professionals about Huntington’s Disease. Our HD families give a face to Huntington’s Disease; HDSA is its voice.

California, Greater Los Angeles	California, Northern
California, Orange County	California, San Diego
Colorado	Georgia
Illinois	Indiana
Iowa	Massachusetts
Michigan	Minnesota
New England	New Jersey
New York, Upstate	Northwest Chapter
Ohio, Central	Ohio, Northeast
Pennsylvania, Western	Texas
Wisconsin

HDSA National Youth Alliance

The National Youth Association is for people ages thirty and under with Huntington's disease in their lives. This could be a pHD (person with HD), somebody at risk, a caregiver, a friend, etc. We are here to support each other, and fight to be the first generation WITHOUT Huntington's.

Huntington's Disease Support Alliance

International Huntington Association

The International Huntington Association (IHA) is a federation of national voluntary health agencies that share common concern for individuals with Huntington's Disease (HD) and their families.

Northern Ireland HD

This site is dedicated to Northern Ireland's Huntingdon's Disease sufferers, their family and friends and anybody else who has an interest in HD.

Japan's Huntington's Disease Network

JHDN's primary goals is to provide and share information on the latest researches and resources on HD, through the internet activities.

Landsforeningen mod Huntingtons Chorea - (Danish)

[Links, HD Information]

L'association HUNTINGTON Provence Alpes Côte d'Azur / Corse

L'association HUNTINGTON Provence Alpes Côte d'Azur / Corse a été créée, en septembre 2002, pour répondre à un besoin de proximité des malades et de leurs familles de notre région aux fins de les recenser, de leur faire savoir qu'ils ne sont pas seuls et de les soutenir.

Ligue Huntington Francophone Belge (LHFB)

A French language Belgian HD Web Site. C est merveilleux!

Scottish Huntington's Association

The S.H.A. is the National Voluntary Organisation which offers information and support to families with HD, their friends and professionals, through a network of local S.H.A. groups and professional staff acting as Huntington's Advisors in various parts of Scotland.

Angel F's "A Survivor's Guide to Huntington's Disease?"

Angela F chronicles her life in an HD family. Her stories have touched many people and provided so much insight into the life of an HD family.
[Stories, Links]

Research Organizations & Medical Sites

American Academy of Neurology: The American Academy of Neurology is a medical specialty society established to advance the art and science of neurology, and thereby promote the best possible care for patients with neurological disorders.
Baltimore Huntington's Disease Center: The Baltimore Huntington's Disease Center is one of the two centers for research in Huntington's disease supported by the NIH in the United States.
Hardin Meta Directory: The Hardin Meta Directory (Hardin MD) has been a popular health portal site for several years, whose purpose is to provide access to the best lists of Internet sources in health and medicine; we were recently cited in a US News article on "Best of the Web: Health.
Harvard Brain Tissue Resource Center: The Harvard Brain Tissue Resource Center is a federally funded, non-profit organization, that serves as a national resource for the collection and distribution of postmortem brain tissue for medical research into the causes and treatment of Huntington’s Disease and other devastating neurological and psychiatric disorders.
HD Drug Works: HD Drug Works is the home site of Dr. LaVonne Goodman. Dr. Goodman is one of our most effective advocates for the HD Community. She and her husband Nathan have expanded the boundaries of HD patient self advocacy and treatment studies.
[Stories, Links, HD Information]
High Q Foundation: High Q is a major player in the world of funding HD Research.
MEDLINE Plus: MEDLINEplus is goldmine of good health information from the world's largest medical library, the National Library of Medicine. Health professionals and consumers alike can depend on it for information that is authoritative and up to date.
Huntington Study Group: The Huntington Study Group (HSG) is a non-profit group of physicians and other health care providers from medical centers in the U.S., Canada, Europe and Australia, experienced in the care of Huntington patients and dedicated to clinical research of Huntington's disease.
Medscape: This link will also automatically submit a query for all pages discussing Huntington's Disease. (Registration is required to read any of the listed articles. Registration is free!)
MentalHealth.com: The lofty goal of this site is "to improve understanding, diagnosis, and treatment of mental illness throughout the world". It's actually a very nice and concise site, especially in respect to it's discussion of drugs related to mental health.
Parkinson's Disease and Movement Disorder Center (Huntington's Disease Clinic): The Huntington's Disease Clinic is a multi-disciplinary clinic dedicated to the concerns of persons with Huntington's disease (HD), persons at risk for developing HD and their family members. The clinic is run by Richard Dubinsky M.D. and Carolyn Gray RN, The goal of the clinic is to provide a thorough assessment of each individual, allowing for more comprehensive care and early recognition of problems.
PubMed is the National Library of Medicine's search service.: Type in "Huntington Disease" (not Huntington's Disease) to get the latest research abstracts. You can also type in the generic name for a particular medication and look at the research on that medication.
RxList.com: This is a nice site for doing quick research on different drugs that you may be interested in talking to your physician or neurologist about. Keep in mind that Web information should always be considered less reliable that a one on one discussion with your physician or pharmacist.
The Merck Manual of Medical Information: No book can replace the expertise and advice of health care practitioners who have direct contact with a patient. The Merck Manual--Home Edition is not intended to do so, nor is it meant to be a self-help book. Rather, we hope the medical information it provides will help readers communicate more effectively with their health care practitioners and, as a result, understand more completely their situations and choices. Suggestions for improvements will be warmly welcomed and carefully considered. - Robert Berkow, M.D., Editor-in-Chief

Caregiving & Support Organizations

Assisted Living Federation of America: Assisted Living is a special combination of housing, personalized supportive services and health care designed to meet the needs–both scheduled and unscheduled–of those who need help with activities of daily living.
Caregiver.com: A magazine publisher's site. Provides information in support of general caregiving.
Caregivers Zone: CaregiverZone — a comprehensive resource for family caregivers, elder care professionals, and seniors.
Florida Angel Trips: What we do at Florida Angel Trips Inc. is organize travel packages to Florida. Packages may include tickets to Sea World, Disney or the beach, lodging, food as well as airfare. The packages depend solely on the terminally ill individuals request.
HealthLink: This site provides valuable information about hundreds of disease. This is a direct link to their page on Huntington's Disease.
Hospice Patients Alliance: The goal of this site is "to reveal what many hospices won't tell you! Make sure your wishes are followed; Get the best pain control available; Avoid Hospice Horrors; Stop Hospice exploitation; Know what your rights are; Recognize and report hospice fraud; know what services you are entitled to and which the hospice must provide!"
I Care for You: A well developed portal of caregiver resources.
IntelliHealth: InteliHealth is a group of creative, energetic, quality-driven people who are passionate about their mission to promote good health. We accomplish this goal by providing credible information and useful products from the most trusted sources. Millions of people around the world are touched by the power of InteliHealth each month. Established in 1996, InteliHealth has become one of the leading health information companies in the world. Editor's Notes: This is a "for profit" corporation. However, they have a special section just for Caregivers, if this link works, that contains articles focusing on caregiving.
Web of Care: Web of Care is a virtual community for home caregivers. We support caregivers coping with a wide variety of conditions associated with aging, several childhood disabilities, AIDS, and many other chronic conditions that require support and care.

Advocacy & Awareness

HD Free with PGD: Yes, you can stop Huntington's Disease in the future generations of your family! With the help of skilled medical professionals, YOU have the ability to prevent your children from inheriting HD.
[Links, HD Information]
Mr. Long-Term Care: This site is an advocate for a commitment to long term care.

HD Blogs

Biking Against Death: This fellow shares his battle against the progression of HD through exercise.
[Stories]
Dave's HD Blog: Dave is a friend of a person with HD. He periodically posts about things that go on in the HD community. Although the site is still active Dave hasn't posted in many months. His archived posts are still available.
[Stories, Links]
Lisa Uncorked: This blog is part of my plan to keep this disease from eating my life. It is an account of my daily struggles and the sense of humor I use to cope.
[Stories]
Dee's "The Reluctant Carer": This Blog is owned by a caregiver for a spouse that is positive to HD. She explores her feelings as a caregiver.
[Stories, Links]
Angel F's "A Survivor's Guide to Huntington's Disease?": Angela F chronicles her life in an HD family. Her stories have touched many people and provided so much insight into the life of an HD family.
[Stories, Links]
The Hd Advocate: This blog belongs to Steve Ireland who posts on the topic of advocacy issues with the primary mission of teaching himself and others how to better advocate for the Hd community.
[Stories, Links, HD Information]
Gene's Blog "At Risk for Huntington's Disease": I am a middle-aged writer living at risk for Huntington's disease. My passion in life is to stop HD and other neurological diseases from devastating individuals and their families.
[Stories, Links, HD Information]
WeAreHD.org: This is a brand spanking new social networking site for those of us who are interested in networking with others in the HD community. The site is "beta" which means that there are bugs, but the developers are asking for your bug reports and your feedback.
[Stories, Links, HD Information]

HD Videos

Bradley's Video
Jacey's Easter: Jacey's fun Easter despite Juvenile HD
Jacey's "The Real Huntington's Disease": Jacey's The Real Huntington's Disease
Jacey's "The Real Huntington's Disease - The Sequel"
Kevin's Video: Kevin shares what is in his heart through this touching video.
Misty's "Running2CureHD": This personal video shared with us by Misty documents what personally drives her to raise funds to cure Huntington's disease.
Ralphie's Video: A short video raising awareness about Huntington's Disease and the efforts by a family to also raise funds to help combat this disease. Made by Ralphie age who 16 has Juvenile HD and includes Annie 13 JHD and Randy 11, at-risk.

HD Family Sites

Robert Bishop's "CureHD Foundation": Another professionally done site.
[Stories, Links, HD Information]
Brenda's Place: [Stories, Links, HD Information]
Tony Bridger's "Tony's Family Site": [Stories, Links, HD Information]
Debbie Bumstead Winans' "Huntington's Child & other Bumstead Art & Literature": [Stories, Links, HD Information]
Renette Davis's "Huntington's Disease Information": This site is VERY rich in HD information.
[Links, HD Information]
Rick Fatica - Artist: My name is Rick Fatica, an artist. I am interested in sharing my work dealing with HD... Here is a sample of my most recent work:
[Stories, Poetry]
Debbie Hart's "Southern Indiana Lady": Shannon's Place
Slaying the Dragon THE site to visit for poetry related to HD!
[Stories, Links, Poetry]
Heather's Huntington's Disease Page: [Stories, Links, HD Information, Poetry]
Inge Letteboer: This nice site developed by "Sunshine" Inge is based in Holland.
[Links]
John and Jean's Story: [Stories]
Carmen Leal's "WriterSpeaker": Carmen Leal is the author of, Faces of Huntington's, a book for and about people with Huntington's Disease, and others who care. She is the co-author of Pinches of Salt, Prisms of Light, a collection of writings about ordinary people doing extraordinary things. Her stories have also been published in books by William Morrow, Simon and Schuster and Broadman and Holman. Her writings have appeared in numerous national and local publications. In addition to her writing, Carmen is a professional speaker and singer. She is a story teller with a dramatic testimony, and is a popular presenter at conventions, conferences and church groups throughout the United States. She is well known for her down to earth style and common sense approach to dealing with life, as well as her enthusiasm and sense of humor. She has the ability to encourage and inspire those who hear her.
[Stories, Links]
Susan Leck's "Living in Faith": [Stories, Links]
Shaun Livermore's "Let Us Find A Cure For HD": This site is dedicated to my mother, who I recently lost to Huntington's Disease.
[Links]
Lloyd's Second Home: [Stories, Links, HD Information]
Lynda Bridge's Huntington's Disease: [Links, HD Information]
Shana Martin's web site: Shana is very active in the HD National Youth Alliance.
[Stories, Links, HD Information]
Mike's Wish Foundation: [Stories, Links, HD Information]
Jean Miller's "Huntington's Disease Caregiver's Web Directory": If there is a HD link on the Web that's not on this page I would be very much surprised.
[Links]
Kim Nicholson's "Memorial for Christopher Dougles Youngblood": [Stories]
Olav's "Kathy's Huntington's Disease Home Page": [Stories, Links, HD Information]
Jim Pollard's "CureHD.com": This nicely put together site is maintained by Jim Pollard and he's put together a lot of fascinating material related to HD.
[Stories, Links, HD Information]
Sandra's La Maladie de Huntington: [Stories, Links, HD Information]
Terry and Larry's Family Site: This site is dedicated to the Bryan twins, Terry and Larry. They share their family story and provide you with an opportunity to help their family in need.
[Stories, Links, HD Information]
Montse Torrecilla's "Enfermedad de Huntington": Our only Spanish page.
[Links, HD Information]
Tracey Jones Huntington's Disease in Australia: [Stories, Links]
Sue Twin's HD Web site: Sue is a rock in the HD community providing Internet support for many people for a long time. This site is rich in descriptions of her personal experiences.
[Stories, Links]
Undrtkr Home Page: [Stories, Links]
Lou Wilkinson's "Lou's World": Lou has been a founding member of the HUNT-DIS LIST since its inception. She has HD and also teaches workshops in coping strategies and living with long-term illness. Lou has also been a member of the Phenomenal Women Of The Web and has received several of their seals.
[Stories, Links]