Imagine being a child or a teenager and being told you have a degenerative muscle disease which will lead to a loss of muscle co-ordination, fatigue, vision impairment, hearing loss, slurred speech and then a serious heart condition - this is Friedreich Ataxia. 1 in every 30,000 affected. 1 in 90 are carriers. There is currently no cure.

Encouragingly, through the amazing work of researchers, our FA community and fundraisers around the world, SKYCLARYS, the first ever treatment for Friedreich Ataxia is now available in the United States and has been registered with the Australian Register of Therapeutic Goods by the TGA. In December 2025 The PBAC recommended SKYCLARYS for listing on the PBS. The Federal Government & Biogen are currently negotiating terms for this potential listing. The treatment is also currently available to eligible patients under the Early Compassionate Access Program.