Muscular Dystrophy Ireland stands firmly with every person and family in Ireland living with Friedreich’s ataxia following yesterday’s recommendation by the HSE Drugs Group that Skyclarys should not be funded through the public health system. For people living with Friedreich’s ataxia, this is not simply a decision about a medicine or a budget. It is about time, opportunity, quality of life, and hope. Skyclarys is the first treatment approved for Friedreich’s ataxia, a rare, progressive and life-limiting condition. The possibility of a treatment that may alter or slow the progression of this disease is therefore profoundly important.

Muscular Dystrophy Ireland (MDI), the national charity supporting people living with neuromuscular conditions, celebrated the arrival of six Football Power Chairs, funded by the UEFA Children’s Foundation, and Lord’s Taverners Ireland/RevUp and in partnership with the Football Association of Ireland (FAI).

Muscular Dystrophy Ireland (MDI) held its national conference today at Croke Park, with Minister for Health Jennifer MacNeill officially speaking at the event. The conference brought together people living with muscular dystrophy and related neuromuscular conditions, along with their families, clinicians, researchers, and disability advocates from across the country.