Friedreich’s Ataxia (FA) is a difficult condition and we, in FARA Ireland, want to help improve the lives of those with it. In the past we have helped promote the plight of FA and now we want to help advocate for drug approval for treatment of FA in Ireland

In February 2023 the Food and Drugs Administration in USA, approved the use of omaveloxolone (Omav for short) for the treatment of patients with FA. There is now a push to get a ‘Omav’ approved worldwide. Studies have shown that all ‘Omav’ decreases progression by more than 50% in patients with FA.

Brona Kearney has FA, and like all those with FA and their families wants to see the new drug approved and funded in Ireland. Brona has identified key areas for us to consider. Currently she is working on finding out exact numbers of people with FA in the country and you can help her do that by filling in this form.

https://docs.google.com/forms/d/e/1FAIpQLSfqhN3O7nINLBsiX3lfBUeX1sSF_ntFpOPrty508-RNqClGVA/viewform?usp=sf_link

“Alone, there is only so much we can do but together there is nothing that we cannot do.”
-Ronald Bartek, President & Co-Founder, Friedreich’s Ataxia Research Alliance (FARA based in USA)

Important Words from Individual in the FA Community

Even a small group can make a lot of noise if they shout together (noticed by parent of twins).

If we all encourage our family and friends to be part of this. We should have no problem turning our modest group into the voice of a hundred plus people all speaking at the same time. It may have more impact in unity. If you wish to contact the advocate for any other reason, please do so at advocateforfainireland@gmail.com

In addition, if you know about anybody with FA, please ask them to consider signing up. If you do not have FA and just want to help with her campaign please also consider sign up