Ataxia Resources Guide

Hereditary ataxia is a group of progressive, degenerative neurological disorders characterized by ataxia (incoordination). Friedreich’s ataxia and Marie’s ataxia are the most common types of hereditary ataxia. There are also sporadic ataxias, which occur spontaneously in individuals with no known family history of ataxia. Here are some useful resources.
The A-T Children’s Project
This excellent web site focuses on ataxia telangiectasia, a progressive, degenerative disorder which is characterized by “telangiectases” (tiny red “spider” veins in the corners of the eyes or on the surface of ears and cheeks exposed to sunlight) as well as ataxia. It includes information about the disorder, including general information, diagnosis, photos, research, etc.; information about the organization; and information for researcher scientists and physicians.
Facts About Friedreich’s Ataxia
A fact sheet from the Muscular Dystrophy Association.
Friedreich Ataxia 1; FRDA
A detailed technical report from the Online Mendelian Inheritance in Man (OMIM) database.
Friedreich’s Ataxia Fact Sheet
This fact sheet from the National Institute of Neurological Disorders and Stroke explains what Friedreich’s ataxia, what its signs and symptoms, how it is diagnosed, how it is inherited, treatment, useful services, research, and resources.
The Friedreich’s Ataxia Parents Group
This web site is the outgrowth of a mailing list for a few parents who have children with Friedreich’s ataxia; the list has grown to an international group that now includes parents of other childhood-onset ataxia. In addition to subscription instructions, this nicely constructed web site includes “FAQs,” useful tips based on personal experiences and ideas offered on the FAPG list, research notes, photos, and more.
Friedreich’s Ataxia Research Alliance (FARA)
FARA is a nonprofit organization that pursues educational, scientific and research activities leading to treatments for Friedreich’s ataxia related ataxias. Its well-organized website includes “…information on Friedreich’s Ataxia (FRDA) and the related Sporadic Ataxias, including current research, abstracts and links to publications from scientific and medical journals, completed research, ongoing studies, as well as information for researchers, patients, patient families, and caregivers. The site also offers support and information for newly-diagnosed families.”
International Network of Ataxia Friends (Internaf)
This mailing list’s web site includes a list of ataxia support groups around the world, links (including an extensive set of links to information about ataxia classification), research, mailing list instructions, members’ homepages, an online newsletter, and more.
National Ataxia Foundation
The National Ataxia Foundation is a nonprofit organization established to encourage and support research into Hereditary ataxia. The web site includes information about the organization, chapters and support groups, events, chat, and more.
Related Subjects
Movement Disorders
Neurological Disorders
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