Call for MLAs to support newborn screening for SMA in Northern Ireland

9 October 2026

We urgently need a commitment from the Northern Ireland government to start newborn screening for SMA. Because every baby deserves the same chance of early diagnosis and early treatment. We’ll be at Stormont on 2 November and need people to invite their MLAs to attend.

At the beginning of October, newborn screening for spinal muscular atrophy (SMA) started in England, and it has been available in Scotland since March. However, there are no plans in place in Northern Ireland or Wales. Each day a newborn is not tested for SMA means later diagnosis and devastating consequences for their future.

We must act now

It’s simply not acceptable that a postcode lottery exists in the UK.

Last month, we took the campaign for newborn screening for SMA to the Northern Ireland Assembly Health Committee. During the meeting, we gave evidence and asked them to formally call on the Northern Ireland Executive to make screening happen.

Now, as we prepare to be at Stormont on Monday 2 November, we need people in Northern Ireland to help us by inviting their MLA to be there so that we can talk to them about what they can do to help make newborn screening for SMA a reality.

Why is newborn screening for SMA important?

Ezra and Bobby both live with SMA type 2. In this short film, their parents explain why newborn screening should be in place in Northern Ireland to help future generations who are born with the condition.

Catherine Simpson from Belfast, whose son Ezra, 4, lives with SMA type 2, explains why it’s important for the government to act: “It frustrates me knowing that Ezra could have lived a life with little to no symptoms of SMA. It could have been prevented, and we wouldn’t have to tell our four-year-old that he’ll never walk. It angers us that our babies have to live a life of decline. We can’t wrap our heads around why screening’s not already in place in Northern Ireland. It can literally save children’s lives.”

Bobby, 8, from County Antrim also lives with SMA type 2. His mum Clare and dad Terence said: “The fact that Northern Ireland still doesn’t have plans to introduce newborn screening for SMA is frustrating and really disappointing. Heartbreaking actually. With earlier treatment, Bobby’s life would have looked very different. A child’s life, and a child’s chance of a normal life, outweigh the cost of what a heel prick test would cost the government.”

We will keep campaigning, but we need your help

We are committed to continuing our campaigning to ensure equity in newborn screening for SMA across the UK. With a muscle wasting condition like SMA, time is everything. And every baby matters.

Please help us make the biggest impact we can on Monday 2 November by inviting your MLA to meet us.