Huntington's disease (HD) is a genetic disease characterized by a progressive and degenerative wasting of brain cells for which there is currently no cure. This causes uncontrolled bodily movements and deterioration of emotions and mental status. According to the Mayo Clinic, signs and symptoms are first recognized in middle age but younger people experience a more severe case with faster progression of the disease. Many informational resources and support outlets are available.
Huntington's Disease Society of America (HDSA)
HDSA offers a large network of resources to individuals with Huntington's and their families. The organization's mission states "Help for Today. Hope for Tomorrow." In this sense, HDSA raises funds to promote and support ongoing research efforts to find a cure, as well as advocate for HD sufferers. On their website, you will be able to scan a large archive of research reports, keep up with the latest news regarding HD or learn about clinical drug trials that you can possibly sign up for. You can also locate a local HDSA chapter, find support groups in your area or connect to a social worker. Through "Faces Of," you can read personal stories of people living with HD or send in your own. Family members and caregivers can attend a series of webinars at "Caregiver's Corner" to help deal with the daily challenges they are faced with.
National Institute of Neurological Disorders and Stroke (NINDS)
A service of the National Institutes of Health (NIH), NINDS offers a very helpful publication called "Huntington's Disease: Hope Through Research." This informational brochure offers detailed information regarding the disease, causes, effects, prognoses and treatment options. The brochure can be read online, printed, emailed or requested to be sent by postal mail. You can also link to available community resources, research studies being conducted and ongoing clinical trials at the NIH or worldwide. Family members can read up on the care an individual with HD needs as well as find government resources and support groups.
Huntington's Disease Advocacy Center
This website is "For HD Families. By HD Families." Message boards, chat rooms and online support are the highlights of this resource center. If you cannot locate a support group near you or somehow unable to make it to one, the Huntington's Disease Advocacy Center provides you with a support forum with more than 6,500 threads and 62,490 posts to date, so you can connect to others from your computer, on your own time and at home. The website also links you to personal blogs written by people with HD. Another wonderful feature of this center is the "Kitchen" where people with HD can post their own recipes or browse through special foods and preparation techniques due to the fact that a person with HD experiences difficulty swallowing.
HOPES
The acronym stands for Huntington's Outreach Project for Education at Stanford and is a project run by Stanford University students. They gather rapidly growing scientific literature on HD so it can be presented in a more coherent and readily accessible format. Besides providing thorough information behind the science of HD, what stands out about this website are its interactive features. You can choose to view video episodes, browse through visually-interactive tutorials or even hear audio recordings of a certain article if you have visual deficits. A special section for kids includes illustrated stories such as "Bryan's Dad Has Huntington's Disease" and games to educate children about HD on their level. HOPES was awarded the first "Giving a Voice to HD" honor by the Huntington's Disease Society of America in 2008 recognizing their significant efforts in raising HD awareness.
