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.
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.
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.
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.
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."
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.
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.