Neurological & Neuromuscular Disorders

Sub-headings:

Reflex Sympathetic Dystrophy Syndrome

Resources in this category:

Acoustic Neuroma Association
http://www.anausa.org/

"The Acoustic Neuroma Association provides information and support to patients who have been diagnosed with or experienced an acoustic neuroma or other benign problem affecting the cranial nerves." On the site, you can view frequently asked questions about acoustic neuromas, detection and treatment information, lists of local and e-mail support groups, and a glossary of relevant terms.

ALS Association
http://www.alsa.org/

"The ALS Association seeks to promote awareness and understanding of ALS and the work of The ALS Association by providing up-to-date information and education materials to the ALS communityŠALS patients and families, caregivers, researchers and members in the health care fields." The ALSA website provides information on ALS, resources for people with ALS and their family, and current research and events.

ALS March of Faces
http://www.march-of-faces.org/

The ALS (Amyotrophic Lateral Sclerosis) March of Faces is a patient/caregiver governed and operated non-profit organization, dedicated to heightening public awareness of ALS, and advocating on issues of people with ALS (Lou Gehrig's Disease). Website includes information on the disease, a newsletter, and awareness and advocacy resources.

The Alzheimer's Association
http://www.alz.org/

"The Alzheimer's Association is the National Voluntary Health Agency dedicated to researching the preventions, cures and treatments of Alzheimer's disease and related disorders, and providing support and assistance to afflicted patients and their families." This site provides the latest medical news, fact sheets, conferences and events, and addresses to contact for membership.

American Academy of Neurology
http://www.aan.com/professionals/

"A professional organization representing neurologists worldwide. Neurology is the medical science dedicated to unraveling the secrets of the universe within, from Alzheimer's and Parkinson's diseases to stroke and migraine. This site provides information to both medical professionals and to the public."

American Association of Neuroscience Nurses
http://www.aann.org/

The American Association of Neuroscience Nurses is a national organization of registered nurses and other health care professionals working with neurological patient s and interested in all areas of neuroscience. Provides valuable information on all aspects of professional development as well as career opportunities.

American Speech-Language-Hearing Association
http://www.asha.org/default.htm

³ASHA is the professional, scientific, and credentialing association for more than 91,000 audiologists, speech-language pathologists, and speech, language, and hearing scientists. This site is a resource for ASHA members, persons interested in information about communication disorders, and for those wanting career and membership information.² Site contains information on Educational Programs, ASHA Convention, The ASHA Store, Publications, Career Information, Consumer Information, News Releases, and Classified Advertising.

Amyotrophic Lateral Sclerosis Society of Ontario
http://www.alsont.ca/

"The Amyotrophic Lateral Sclerosis Society of Ontario is dedicated to finding the cure for ALS and to providing support and education to people with ALS and their families. This site provides information about the disease and the programs and services available to people with ALS."

Anencephaly Support Foundation
http://www.asfhelp.com/asf/home

This national non-profit foundation is dedicated to educating "parents, families and the educational and medical communities" regarding infant anencephaly (a developmental brain disorder characterized by the absence of a cranial vault). This site provides medical and prevention information, personal stories and support group information.

Australasian Neuroscience Nurses' Association
http://www.anna.asn.au/

"The Australasian Neuroscience Nurses' Association is a non-profit organisation [sic] committed to the advancement of Neuroscience patient care." This site includes membership information, news updates and current events happening in neuroscience patient care, and the ANNA newsletter.

Autism National Committee
http://www.autcom.org/

"Autism National Committee is the only autism advocacy organization dedicated to "Social Justice for All Citizens with Autism" through a shared vision and a commitment to positive approaches." The site includes information about autism, membership information, and access to the orginazational newsletter.

Autism Society of America
http://www.autism-society.org/site/PageServer

"The mission of the Autism Society of America is to promote lifelong access and opportunities for persons within the autism spectrum and their families, to be fully included, participating members of their communities through advocacy, public awareness, education, and research related to autism." To this end, the site provides information on various topics related to autism.

Battens Disease Support and Research Association
http://www.bdsra.org/

The Battens Disease Support and Research Association (BDSRA) is "an international support and research networking organization for families of children and young adults with an inherited neurological degenerative disorder known as Batten Disease." This website contains a full description of BDSRA, list of services and local chapters of the BDSRA, the latest news on BDSRA research and treatment, and links to related websites.

Children and Adults with Attention-Deficit/Hyperactivity Disorder
http://www.chadd.org/

"Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD) was founded in 1987 in response to the frustration and sense of isolation experienced by parents and their children with AD/HD.... Today, individuals and families dealing with AD/HD turn to CHADD, the national organization representing individuals with AD/HD, for education, advocacy and support." The site offers a wealth of information about the disorder as well as legislative and research issues, news releases, "Attention!" magazine, membership and conference information and access to local chapters. There are also links to pertinent government sites, legislative, legal and state resources, coexisting disorders, special education, disability and health issues, and other AD/HD organizations.

Epilepsy Foundation of America
http://www.efa.org/

"The Epilepsy Foundation of America (EFA), founded in 1968, is supported almost entirely by private donations, primarily from members of the public. EFA has national and local programming. National programs include a toll-free information service, research, education and legal and legislative advocacy. Local services may include outreach to schools and the community, support groups and employment services." This comprehensive site facilitates access to legal notices, publications, news and FAQ's about epilepsy, as well as related Web links and Chat programs. EFA offers site visitors a searchable database.

Families of Spinal Muscular Atrophy
http://www.fsma.org/

Families of SMA (Spinal Muscular Atrophy) is a non-profit organization, founded for the purposes of encouraging support for people with SMA and to promote research into the causes and cure of Spinal Muscular Atrophies. This website contains information and resources on living with SMA, research activities, list of support groups, and links to other SMA-related sites.

Family Caregiver Alliance
http://www.caregiver.org/

"Family Caregiver Alliance, (is) the premier caregiver support organization for caregivers of adults with Alzheimer's disease, stroke, traumatic brain injury, Parkinson's disease, ALS and related brain disorders." The website provides fact sheets, statistics, public policy issues, a newsletter, community resources, and online support for caregivers.

International Rett Syndrome Association
http://www.rettsyndrome.org/

"The mission of the IRSA is to support and encourage medical research to determine the cause and find a cure for Rett syndrome, to increase public awareness of Rett syndrome, and to provide informational and emotional support to families of children with Rett syndrome." This site is comprehensive in scope and provides links to information, publications and research about the syndrome as well as related resources on the WWW and Telnet links.

Moebius Syndrome Foundation
http://www.ciaccess.com/moebius/

"The Moebius Syndrome Foundation is a nonprofit organization started by parents and people with Moebius Syndrome, a rare disorder characterized by lifetime facial paralysis." This website contains a description of Moebius Syndrome's symptoms and treatments, chat room for patients and their parents, chat room for medical professionals, research updates from conferences and a list of other resources and related links.

Muscular Dystrophy Association - USA
http://www.mda.org/

"MDA combats neuromuscular diseases with an unparalleled worldwide research effort and a nationwide program of medical services. MDA is the world's leading voluntary health agency sponsoring neuromuscular disease research. MDA supports hundreds of research projects at universities and medical centers in the United States and abroad seeking the causes of, and treatments for, 40 neuromuscular diseases. MDA supports health education to increase understanding of neuromuscular diseases, through international scientific meetings and makes available a wide array of educational print and video materials. MDA offers a vast array of nationwide support services and clinical care including telephone or Internet access." Donors are able to pledge their support directly on the Internet. MDA has an online bulletin board as well as a "library information service" with downloadable current information on the diagnosis and treatment of the disease.

Myasthenia Gravis Foundation of America
http://www.myasthenia.org/

"The only national volunteer health agency dedicated solely to the fight against myasthenia gravis. The Myasthenia Gravis Foundation of America, Inc., a nonprofit organization, was established to carry out the following: "To facilitate the timely diagnosis and optimal care of individuals affected by myasthenia gravis and closely related disorders and to improve their lives through programs of patient services, public information, medical research, professional education, advocacy and patient care." The vision of the Foundation is to have a 'World Without MG.'" The MGFA web site includes:

• general information about myasthenia gravis
• links to recent research on the disorder
• news from the foundation
• listings of local chapters of the association, searchable by state
• links to other sites with information about the disorder

..and much more.

National Ataxia Foundation
http://www.ataxia.org/

"The National Ataxia Foundation is a nonprofit organization established in 1957 with the primary mission of encouraging and supporting research into Hereditary Ataxia, a group of neurological disorders which are chronic and progressive conditions affecting coordination. There are more than 45 affiliated chapters and support groups throughout the U.S. and Canada." This site contains a description of NAF and its treatments, a list of local support groups, calendar of NAF related events, on-line issues of the NAF publication Generations, Thursday evening chat groups, and links to other NAF web sites.

National Autistic Society
http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=10

"The National Autistic Society (NAS) is the UK's foremost charity for people with autistic spectrum disorders and their families, spearheading national and international initiatives and providing a strong voice for autism." The site provides extensive information for People with an autistic spectrum disorder (autism or Asperger syndrome), their families, professionals, and journalists.

National Institute of Neurological Disorders and Stroke Home Page
http://www.ninds.nih.gov/

"The NINDS, an agency of the U.S. Federal Government and a component of the National Institutes of Health and the U.S. Public Health Service, is a lead agency for the Congressionally designated Decade of the Brain, and the leading supporter of biomedical research on disorders of the brain and nervous system." The site features current events, "general science-based information about selected neurological disorders, NINDS-funded clinical trials,NINDS clinical studies at the NIH, voluntary health agencies, clinical alerts and advisories," funding information, and a "guide to NINDS clinical and basic neuroscience research on the NIH campus including research and training opportunities." It has a search engine.

The National Multiple Sclerosis Society
http://www.nmss.org/

"Through a network of 140 local chapters and branches, the National MS Society offers programs and services including local referrals, information and education, professional and peer counseling, self-help groups and equipment assistance. The Society is the worlds largest source of MS related research funds investing in basic, clinical, and health-policy investigations and fellowships that encourage scientists to focus on MS research. The Society is also a world center for information about MS and publishes booklets, brochures, and a national magazine for people who live with this disease." This site posts comprehensive technical information about MS in English, German, Spanish, French and Italian. Society members are people with MS, their families, health-care professionals and staff members. The MS Society is a voice for an estimated 350,000 Americans with MS. In addition, many afflicted people from all over the world access the MS Society's Web pages which are written in several languages. Many other related links are provided.

The National Neurofibromatosis Foundation
http://www.neurofibromatosis.org/

A nonprofit medical foundation "dedicated to improving the health and well being of individuals and families affected by the neurofibromatoses (NF)." The foundation sponsors research, encourages the development of clinical activities, develops educational programs for the public, and provides support and referral services for patients and families.

National Parkinson Foundation
http://www.parkinson.org/

"The Foundation supports researchers; physicians; occupational, physical and speech therapists and psychological counseling. It also provides educational and medical information for the Parkinson patients, their families, neurologists and general medical practitioners." There are facts here about Parkinson's Disease, including a glossary of terms and nutritional guidelines, as well as news, events, and publications--some of which are available free online. You can search for support groups by area code and there are links to other sources of support for patients and caregivers.

National Stuttering Association
http://www.nsastutter.org/

"The National Stuttering Project is a non-profit organization dedicated to bringing hope, dignity, support, education and empowerment to children and adults who stutter." In addition to informaton about the organization this site offers links to online resources for stuttering, activities and publications, and connections to various local support groups.

On-Line Asperger Syndrome Information and Support
http://www.udel.edu/bkirby/asperger/

The O.A.S.I.S. website is devoted to providing information concerning Asperger Syndrome (a form of autism) to parents, educators, and health professionals. This site contains access to ASPEN (a newly formed National non-profit support and advocacy organization for Asperger Syndrome and Related Disorders), research papers and descriptions of AS, list of current research projects seeking participants, classroom management tips for educators, legal information, social strategies, recommended reading list, list of support groups, and links to other Autism related sites.

The Perspectives Network
http://www.tbi.org/

The Perspectives Network (TPN) is a non-profit organization devoted to the needs of survivors of brain injuries. "TPN's primary focus is communication between survivors, family members/ caregivers/friends, professionals and community members in order to create positive changes and enhance public awareness and knowledge of acquired brain injury." This website contains an on-line library, book store, FAQs, survivor tips, support groups, chat rooms and related links.

Restless Legs Syndrome Foundation
http://www.rls.org/Page.aspx?&pid=471&srcid=471

"The Restless Legs Syndrome Foundation is a nonprofit 501(c)(3) agency that provides information about RLS; helps develop support groups; supports research to find better treatments and, eventually, a definitive cure; educates physicians and patients about RLS; and publishes a quarterly newsletter known as NightWalkers." The website has links to resources, a newsletter, membership and support group information, and a chat room.

Spina Bifida and Hydrocephalus Association of Canada
http://www.sbhac.ca/beta/index.php

"Spina Bifida & Hydrocephalus Canada is a federation of 13 organizations working collectively on behalf of people with Spina Bifida and/or Hydrocephalus". Site contains information about the disease, contact information, recent announcements, and numerous related links.

Spina Bifida Association of America
http://www.sbaa.org/site/c.gpILKXOEJqG/b.2016945/k.2321/Spin...

This site is full of information about this disease and its prevention. The site includes a nationwide clinic directory, facts about spina bifida, articles from the SBAA newsletter, and information for ordering publications.

United Cerebral Palsy Association
http://www.ucp.org/

"For more than 45 years, United Cerebral Palsy (UCP) has bee committed to change and progress for persons with disabilities. The national organization and its nationwide network of 153 affiliates strive to ensure the inclusion of persons with disabilities in every facet of society - from the website to the workplace, from the classroom to the community."