We’re continuing our SMA Awareness month campaign “Every Piece of the Puzzle” with a brief overview of how newborn screening for SMA became a reality.
For families affected by spinal muscular atrophy (SMA), early diagnosis can change everything.
Advances in treatment have transformed what is possible and we know that the earlier treatment begins, the better the outcomes.
That is why newborn screening for SMA has always been so important.
Newborn screening provides the opportunity to identify babies with SMA before symptoms appear, allowing them to access specialist care and treatment at the earliest possible stage. For the SMA community, this has always represented hope: the chance to give every baby born with SMA the best possible start in life.
The 2018 decision: a setback, but not the end
In 2018, the UK National Screening Committee (UK NSC) reviewed whether SMA should be added to the NHS newborn blood spot screening programme.
At the time, the decision was made not to recommend newborn screening for SMA. For families, clinicians and organisations supporting people affected by SMA, this was deeply disappointing. The SMA community understood the urgent need for earlier diagnosis and the life-changing difference that access to treatment could make.
But this decision did not stop the campaign.
Instead, it marked the beginning of renewed determination from families, healthcare professionals and advocacy organisations to continue making the case for newborn screening.
A united campaign for change
Following the 2018 decision, organisations across the SMA community came together to strengthen the evidence and advocate for change.
SMA UK, alongside Muscular Dystrophy UK (MDUK) worked collaboratively with families, clinicians, researchers and other partners through the SMA Newborn Screening Alliance. The Alliance united the voices of the SMA community with a shared ambition: to ensure babies born with SMA could be diagnosed as early as possible and access treatment before irreversible symptoms developed.
The campaign involved years of dedicated work, including engaging with decision-makers, sharing evidence, supporting research, raising awareness and ensuring the experiences of families affected by SMA were heard.
Families played a central role in this journey. By sharing their stories and explaining the impact of delayed diagnosis, they helped demonstrate why newborn screening was not just a medical decision, it was about giving children the best possible opportunity to thrive.
Building the evidence for newborn screening
Since 2018, the landscape of SMA treatment and care has continued to change. New treatments became available, and evidence continued to grow showing the benefits of diagnosing and treating babies before symptoms appeared. Clinical evidence demonstrated that babies identified through newborn screening and treated early could achieve significantly better outcomes than those diagnosed after symptoms had started.
The SMA community continued to work to ensure that this evidence was recognised. SMA UK, MDUK and TreatSMA continued to advocate for families by highlighting the urgency of early diagnosis and working with healthcare systems to help make newborn screening a reality.
The power of partnership and persistence
The journey towards newborn screening for SMA shows what can be achieved when a community comes together.
For years, families, charities and healthcare professionals campaigned for change. They attended meetings, contributed to consultations, raised awareness and shared their personal experiences to help influence decision-makers. Every conversation helped. Every story mattered. Every person who supported the campaign played a part in moving newborn screening closer to becoming available.
This progress has been driven by a shared belief that babies with SMA should not have to wait until symptoms appear before receiving a diagnosis and access to treatment.
Scotland leads the way
A major milestone came when Scotland introduced newborn screening for SMA in March 2026, becoming the first country in the UK to offer routine screening for babies.
The introduction of screening in Scotland showed that change was possible and provided further momentum for ensuring babies across the UK could benefit from early diagnosis.
Newborn screening for SMA comes to England
After years of campaigning and collaboration, newborn screening for SMA is now being introduced in England. This represents a historic achievement for the SMA community and marks a significant step forward in the way SMA is identified and treated.
For babies born with SMA, earlier diagnosis means earlier access to specialist care, support and treatment, giving them the best possible chance to reach their potential.
Looking ahead
At SMA UK, we know that newborn screening is about more than a test.
It is about opportunity.
It is about giving families answers sooner.
It is about starting treatment before symptoms progress.
It is about changing the future for children born with SMA.
We are incredibly grateful to everyone who has contributed to this journey, families who shared their experiences, clinicians and researchers who built the evidence, and campaign partners including MDUK and TreatSMA who worked tirelessly alongside us.
This milestone belongs to the whole SMA community.
Together, we have helped transform what the future can look like for babies born with SMA, but we wont stop until all of the UK is screened.
