Statement from John Paul O’Shea TD – Skyclarys

Today’s approval of Skyclarys for people living with Friedreich’s Ataxia in Ireland is an enormously emotional and welcome moment.

Above all, my thoughts today are with the individuals and families who have lived with the devastating reality of Friedreich’s Ataxia and who have fought so courageously for access to this treatment.

I want to particularly acknowledge Paudie Coady from North Cork, who is living with Friedreich’s Ataxia, and his dad Craig, who have shown extraordinary courage and determination throughout this difficult journey.

Their experience is a powerful reminder of the devastating impact this disease has on individuals and families, and of the importance of continuing to fight for access to treatments that can offer hope for the future.

I also want to acknowledge Biogen for its continued engagement with the HSE throughout this process and for its willingness to engage constructively with representatives working on behalf of people affected by Friedreich’s Ataxia.

A number of Fine Gael representatives met with Biogen last week to discuss access to Skyclarys, and we appreciate their continued engagement with us also. That ongoing dialogue has been important as we worked towards today’s positive development.

Skyclarys is not a cure, but for people living with this progressive condition, the opportunity to slow its progression can mean something incredibly precious – more time, greater independence and hope for the future.

I want to acknowledge everyone who campaigned relentlessly to get us to this point. Families should never underestimate the difference their voices have made.

After such a long and difficult journey, I sincerely hope today’s decision brings some comfort, relief and renewed hope to Paudie, Craig and their family, and to families across Ireland living with Friedreich’s Ataxia.