Friedreich’s ataxia patients could yet wait years to receive life-changing drug, group warns

Rory Coady’s football jersey, bearing the number 13, is pictured beside a family photograph of Craig and his two sons. Rory died from Friedrich’s ataxia last year, and his father is now campaigning for treatment to give his brother Paudie a fighting chance against the disease. Picture: Chani Anderson

The health minister has been called on to urgently allocate resources to ensure Friedreich’s ataxia patients are not waiting months or even years to receive life-changing drugs.

The Friedreich’s Ataxia Research Alliance Ireland (FARA) group has written to Jennifer Carroll MacNeill, warning that people suffering from the condition may not be prescribed Skyclarys until June 2028 if the current level of service is not increased.