Newborn babies to be tested for Spinal Muscular Atrophy from next year – a victory for our community!
We are really pleased to share the good news that Spinal Muscular Atrophy (SMA) has been approved for inclusion in Ireland's National Newborn Bloodspot Screening Programme, commonly known as the heel prick test. Approval of SMA is a massive milestone for the community and overall progress of newborn screening in Ireland. It is particularly valuable because new treatments have become available for SMA in recent years with the potential to significantly improve outcomes through earlier diagnosis and treatment.
In Profile: Interview with Aoife McNicholl Ireland Powerchair Football Team Member.
I’m Aoife McNicholl and I play powerchair football. I have Spinal Muscular Atrophy Type II. Powerchair football is a unique sport that provides opportunities for people with a high level of impairment to access the game of football.
Reimbursement Approval of Evrysdi® for the Treatment of Spinal Muscular Atrophy
On 1 September the HSE announced that Risdiplam (Evrysdi®) has been approved for reimbursement in Ireland. This makes Risdiplam the third SMA medicine available in Ireland, alongside Zolgensma and Spinraza.