SMA newborn screening update: Our evidence to the Northern Ireland Assembly Health Committee

11 September 2026

Yesterday, Thursday 10 September, we were in Belfast alongside our partners SMA UK, taking our campaign for newborn screening for spinal muscular atrophy (SMA) to the Northern Ireland Assembly. The Assembly’s Health Committee invited us to give evidence, so that the Committee’s members could hear more about what we’re calling for and how they might consider it for their future work.

Why is this important?

England will soon begin screening babies for SMA on a phased rollout. Scotland already began screening earlier this year. And, as we told the committee, Scotland’s first baby was recently diagnosed through the new screening programme, beginning treatment last week.

However, there are currently no plans to begin newborn screening for SMA in Northern Ireland, meaning babies there are at risk of missing out on life-changing early diagnosis and treatment.

Portia from SMA UK told the Committee the powerful story of her nine-year-old son Ezra, who was diagnosed with SMA type 1 at four months. Treatment saved Ezra’s life. However, being screened at birth would have meant treatment at the earliest opportunity. He could have retained the ability to walk, to swallow, to sleep safely and comfortably without a ventilator or support to simply roll over. With newborn screening his life would be more independent and crucially, healthier.

It’s lifechanging for families and will save money

During the meeting, we also explained how screening for SMA would save the government in Northern Ireland money in the long run. Investing in a screening programme will change the lives of children born with SMA and their families and avoid the need for more intensive medical care and support costs throughout the course of their lives.

What happens next?

We asked the Committee to formally call on the Northern Ireland Executive to make screening happen. The Committee will now go away and consider our evidence, and we’ll be sure to keep you updated with next steps and our other campaigning plans.