SMA newborn screening: Northern Ireland update

3 November 2026

Yesterday, Monday 2 November, we were in Belfast alongside the charity SMA UK and families from the SMA community, continuing our campaign for newborn screening for spinal muscular atrophy (SMA) in Northern Ireland.

At an event in the Northern Ireland Assembly, MLAs learned more about SMA, why newborn screening matters, and heard directly from families living with the condition. Thanks to the incredible response from our community, who wrote to their MLAs ahead of the event, we spoke to more than 20 MLAs throughout the day.

Several MLAs told us they had received a large number of emails from constituents about newborn screening for SMA, highlighting just how much support there is for this issue across Northern Ireland. It was encouraging to see such strong engagement, with many MLAs keen to understand how they could help drive progress.

Among those who attended was Health Minister Robbie Butler. We discussed how newborn screening can identify babies with SMA before symptoms appear, allowing life-changing treatments to begin as early as possible. The Minister agreed to meet with us again in the coming weeks.

Why is this important?

As we highlighted to MLAs, Northern Ireland is at risk of being left behind compared to the rest of the UK.

Scotland began screening newborns for SMA in March, with the first baby identified through the programme and starting treatment in September. England began a phased rollout of newborn screening for SMA last month. Just over a week ago, Wales committed to upgrading its newborn screening laboratory to enable expansion of its screening programme, which we hope will support the addition of SMA in the future.

However, there are still no plans to screen newborns for SMA in Northern Ireland.

Bobby, 8, from County Antrim 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 isheartbreaking. 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.”