Unfortunately there is no cure for FA presently but research into FA is on going worldwide.
Exercise and working the muscles is one of the best ways for people with FA to try and slow progression.
A 48-week trial using omaveloxolone, in an international randomised double-blind trial in FA published initial results in the middle of the COVID pandemic which showed that omaveloxolone improved neurological function and was well tolerated.
On the 28 February 2023 the Food and Drug Administration (FDA) in USA approved SKYCLARYS (Omaveloxolone, ‘Omav’ for short) for those over 16 years of age with FA. This is the first treatment ever approved for people with FA.
In Ireland, ‘Omav’ will first need to be approved by the European Medicines Agency (EMA), which is based in Amsterdam before the Irish agency, Health Products Regulatory Authority (HPRA), will review it.
The EMA decision regarding approval is expected in January 2024.
Assuming the EMA and HPRA approve ‘Omav’ for use in FA and given that the price of ‘Omav’ is $370,000 per person per year, it will then be necessary to apply to the Health Service Executive (HSE) to fund the drug.
There is huge excitement and optimism among the community. This treatment will not reverse your current progression but it will help further progression by more than 50%.
To assist with approval please fill in the google form under the advocacy tab.