On Monday 2 November, we were in Belfast alongside families from the SMA community and the charity Muscular Dystrophy UK, continuing our campaign to ensure newborn babies in Northern Ireland have access to screening for SMA.  

At an event in the Northern Ireland Assembly, MLAs heard about SMA, the importance of early diagnosis and why introducing newborn screening could make such a significant difference to babies born with the condition. Most importantly, they heard directly from families living with SMA about the impact of earlier diagnosis and treatment. 

Thanks to the fantastic support of our community, many of whom contacted their MLAs ahead of the event, we were able to speak with more than 20 MLAs throughout the day. 

Several MLAs told us they had received a significant number of emails from constituents calling for newborn screening for SMA. This demonstrated the strength of feeling across Northern Ireland and the importance of ensuring families’ voices are heard. 

We were also pleased to meet with Health Minister Robbie Butler. We discussed how newborn screening can identify babies with SMA before symptoms develop, making it possible for treatment and specialist care to begin as early as possible. The Minister agreed to meet with us again in the coming weeks. 

Why does newborn screening matter? 

SMA is a rare genetic condition that causes progressive muscle weakness. Early diagnosis is particularly important because damage to motor neurons can happen before symptoms become apparent. 

There are now disease-modifying treatments available for SMA, and evidence shows that starting treatment as early as possible, ideally before symptoms develop, can lead to better outcomes. 

As we explained to MLAs, Northern Ireland risks being left behind as progress is made elsewhere in the UK. 

• Scotland introduced newborn screening for SMA in March 2026. The first baby was identified through the programme and began treatment in September. 

• England began a phased introduction of newborn screening for SMA in October 2026. 

• Wales has committed to upgrading its newborn screening laboratory, which we hope will help support the future introduction of SMA screening. 

However, there are currently no plans to introduce newborn screening for SMA in Northern Ireland. 

We believe every baby should have the same opportunity to benefit from early diagnosis and treatment, regardless of where they are born. A postcode should not determine whether a baby has access to this potentially life-changing opportunity. 

Families’ experiences show why action cannot wait 

At the event, we heard from Bobby, aged eight, from County Antrim, who lives with SMA type 2. His parents, Clare and Terence, shared their experience and explained what earlier diagnosis could have meant for their son. 

They said: 

“The fact that Northern Ireland still doesn’t have plans to introduce newborn screening for SMA is heartbreaking. 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.” 

Stories like Bobby’s are a powerful reminder of why we continue to campaign. For families affected by SMA, earlier diagnosis is not simply about a test. It is about giving babies the opportunity to access treatment before symptoms develop and helping families have the best possible start. 

Giles Lomax, SMA UK’s Chief Executive, said: 

‘We know that early diagnosis can make a life-changing difference for babies born with SMA. With newborn screening now being introduced in Scotland and England, it is vital that families in Northern Ireland are not left behind. 

‘We were really pleased with both the number of attendees and engagement from MLA’s from across all political parties. Yesterday, I another positive step forward to making sure all four home nations have NBS introduced as soon as possible. Over the next few weeks, we will be sitting down with Heatlhh Sevtrwtay Robbie Butler to provide a clear picture of how NI can start screening without delay”  

What happens next? 

Our focus now is on securing a commitment from the Health Minister to introduce newborn screening for SMA in Northern Ireland. 

We have asked the MLAs who attended the event to write to the Health Minister, highlighting the importance of early diagnosis and calling for action. 

You can help us make this happen. 

If you live in Northern Ireland, please contact your MLA and ask them to support the introduction of newborn screening for SMA. Sharing your experiences and explaining why early diagnosis matters can help keep this issue firmly on the political agenda. 

Every message helps ensure that the voices of the SMA community are heard. 

Find out more about SMA UK’s campaign for newborn screening. 

Together, we will continue campaigning until every baby born in the UK has the opportunity to benefit from newborn screening for SMA. 

This event was organised and funded by Novartis and supported by Muscular Dystrophy UK and SMA UK.