Connect

These events highlight updates on the FA drug development pipeline, clinical management of FA, insights on living with FA and more. Speakers include researchers and pharmaceutical partners working on FA, clinicians with FA expertise, and individuals with FA and their caregivers.

For individuals living with FA and their families, attending community events offers invaluable opportunities to connect with others on the same journey, feel empowered, develop the skills and confidence to advocate for themselves, and witness first-hand the collective strength of community.

The FARA Ambassador Program is a united volunteer team of individuals living with FA. FARA Ambassadors are positive, supportive, peer representatives for the FA community who actively raise awareness and funds for FARA. Their dedicated support of FARA is key to continued success toward FARA’s ultimate goal of treatments and cures for FA.

The FA App helps connect and empower individuals with FA worldwide so they can meaningfully participate in FA research. The FA App is available on iOS and Android.

There are many other platforms that individuals with FA and their families can use to connect with each other, both through FARA and externally. The Friedreich’s Ataxia Parents Group (FAPG) is a free international email-based support group for parents and guardians of children with FA or other childhood-onset/undiagnosed ataxias. The FAPG is run by a group of parents of individuals with FA.

Each month, FARA ambassadors host virtual Hangouts (for adults) and Teen Hangouts (for ages 13-19). FA Hangouts are an opportunity to hang out online for adults with Friedreich’s ataxia (caregivers to assist are welcome to accompany adults with FA). Teen Hangouts is an opportunity to hang out online for teens with ataxia, moderated by two adult FARA ambassadors. Visit the page to learn more about the schedule and guidelines.