24/08/2026
💙 PLEASE READ & SHARE — FRIEDREICH’S ATAXIA & SKYCLARYS 💙
Until recently, many people may never even have heard of Friedreich’s ataxia (FA). I really believe that needs to change.
There are only around 200 people in Ireland living with Friedreich’s ataxia, yet I personally know two young people with this condition, and I’m aware of two more in a neighbouring town. When you think about how rare this disease is, that statistic really hits home.
Through working in retail and chatting to customers, the subject has come up a number of times, and what has really struck me is how few people know what Friedreich’s ataxia actually is.
Please Google it. Read about it. Learn what these young people and their families are facing.
Friedreich’s ataxia is a rare, inherited and progressive neurological condition. Over time it can affect a person’s balance, coordination, mobility, speech and other aspects of their health.
For so long there was no approved treatment specifically for Friedreich’s ataxia.
Now there is Skyclarys (omaveloxolone) — the first approved treatment for Friedreich’s ataxia, authorised in Europe for people aged 16 and over. It is not a cure, but treatment has been shown to slow the progression of the disease.
The battle now is to have Skyclarys funded and made available to eligible patients here in Ireland.
When you actually know young people living with this condition, these aren’t just statistics or figures on a page. These are young people with families, friends, hopes and plans for their futures.
💙 They deserve every possible chance.
So please take a few minutes today. Google Friedreich’s ataxia. Google Skyclarys. Read about what these young people are going through. Talk about it and share their story.
The more people who understand what is at stake, the stronger their voice becomes.
🇮🇪 Let’s get Skyclarys over the line in Ireland. 💙
