Spinal Muscular Atrophy (SMA) briefing
I attended a briefing in Dáil Éireann yesterday from the families of people suffering Spinal Muscular Atrophy (SMA). I had the honour of meeting with Cilian Mearns and Grace O’Malley at the briefing. Grace (9) made a great presentation, setting out her issues. I subsequently spoke with Minister Simon Harris about the issue of making the drug available and I am to have further discussions with him next week. It was one of the most powerful presentations I have seen in my time as a TD and I want to thank all the families and supporters that travelled to Dublin to attend the event.