Navigating the terrain of a new diagnosis or a new development in an existing disease can be overwhelming. When traveling through new territory, it is helpful to have a map or a guide.
In an effort to create such a tool, FARA has outlined some fundamental information about Friedreich's ataxia as well as the drug development and clinical trials process.
To help you chart your own course alongside the latest research findings, there is also information about the FA patient registry and recruitment for active clinical trials.
Along with your "map," it is also good to connect with people who have either traveled the road before you or are traveling it along with you. FARA has also included the profiles for some individuals with FA as well as links to 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.
2016 - FARA UCLA Friedreichs Ataxia Patient Symposium
On January 21, 2016 The FARA UCLA Friedreichs Ataxia Patient Symposium was held in Los Angeles at the conference and training center on the University of California Los Angeles Campus. This was an educational symposium for people living wtih Friedreich's ataxia and their families.
The following resources presented at the conference are available here:
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.
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.
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
Living the Decision: A Pocket Guide to Cramming 72 years of living into 27.
By Phillip Bennett and Jaime Richards
(All proceeds donated to FARA)
By Gabrielle Ford
($5 per book donated to FARA)
The FA Project is a non-profit organization founded by individuals who have all first learned of this debilitating disease through close relationships with Richard Currier. Their goal is to provide those living with FA the tools and resources necessary to lead the best life possible.
Mercy Medical Airlift is a non-profit organization with 25 years of medical air transportation experience. Manages many programs available to patients with both common and rare diseases.
The Healthcare Hospitality Network, Inc. (HHN) is a nationwide professional association of nearly 200 unique, nonprofit organizations that provide lodging and support services to patients, families and their loved ones who are receiving medical treatment far from their home communities.
Ronald McDonald House Offers low-cost lodging to families booked through a hospital or CARES Foundation (at least 6 months in advance).