Tomorrow’s Decision: Funding Skyclarys in Ireland
24 August - 15 mins
Podcast Series
iRadio's Groupchat
It all comes down to tomorrow for people living with Friedreich’s ataxia, as the HSE decision on funding Skyclarys is due.
Valerie McHugh is joined by 28-year-old trainee solicitor and campaigner Emily Felix, who speaks honestly about the nerves, the hope, and the exhaustion after months of fighting for a drug patients say is life-changing — and already approved in 11 other European countries.
Emily also explains what day-to-day life with Friedreich’s ataxia can look like as it progresses, and why the “cost” conversation feels so dehumanising.
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