Family Support & Resources
Internet Support Groups
|FAPG Support Group
The Friedreich's Ataxia Parents Group (FAPG) is a closed list, limiting subscriptions to parents & guardians of children with Friedreich's Ataxia (or other childhood onset ataxias). From all over the world, parents who are having similar experiences raising children with FA communicate with one another.
FA_babelFamily is an independent multilingual mailing-list born in order to become a source of information for all people coping with Friedreich's Ataxia in Europe and worldwide. All messages dealing with what is being done in the field of scientific research and fund-raising in order to reach a cure for FA are particularly appreciated.
INTERNAF is an international e-mail based forum to exchange information and support for those who are diagnosed with ataxia. Open to patients, families and friends.
DS/USA offers nationwide sports rehabilitation programs to anyone with a permanent disability. Activities include winter skiing, water sports, summer and winter competitions, fitness and special sports events.
|Road ID Bracelet
Road ID Interactive is an ID bracelet that allows you to build a fully updateable, secure Emergency Response Profile (ERP) that is available to first responders via telephone and internet.
|Challenged Athletes Foundation
Established in 1997, the Challenged Athletes Foundation (CAF) is a unique organization that recognizes the athletic greatness inherent in all people with physical challenges and supports their athletic endeavors by providing grants for training, competition and equipment needs.
|Sample Kids Information Sheet|
|Sample Class Presentation - Zac|
|Sample Class Presentation - Alec|
|THERE'S NOTHING WRONG WITH ASKING FOR A LITTLE HELP... and other myths
By Dave Lewis, a memoir of his life with Friedreich's Ataxia
For a list of additional voluntary organizations that offer support for Friedreich's ataxia patients worldwide, please visit the Partners page.