Advocacy

Visit the following websites for information about Friedreich’s ataxia (FA), FA support groups, and activities and events.

Friedreich’s Ataxia Research Alliance (FARA)

FARA is on a mission, and they have people like you in mind when they set goals they want to achieve. FARA is an organization dedicated to the pursuit of research to find treatments and a cure for FA. They are committed to raising money for research, promoting public awareness about FA, and working with a whole host of professionals in order to further their mission to find treatments and a cure.

At the FARA website, you’ll find information and resources to help you learn as much as you can about FA. You’ll also find ways to get involved. Check out some upcoming events and activities now.

Most important, here is where you’ll find other people who are just like you, living with FA. To find out more about connecting with other FA patients check out, FARA’s Meet the Community program..

National Ataxia Foundation (NAF)

The NAF is an organization dedicated to improving the lives of people with ataxia through support, education, and research.

At the NAF website, you’ll find many free publications to help stay informed on FA management topics, such as the importance of exercise and the reasons for following dietary guidelines specifically for ataxia. If you are looking for local resources NAF’s website can help you find support groups and clinics near you.

Muscular Dystrophy Association (MDA)

The MDA has been committed to improving the lives of people with muscular dystrophy and other neuromuscular diseases through innovations in science and care. Visit the MDA website now.

Support groups

If you’re interested in joining online support groups, you can find them on Facebook. You may also find it helpful to join the Friedreich’s Ataxia Parents Group, a small group of FA parents that have been coming together via email for support and information since 1997. Learn more by visiting their website.

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