Newborn screening for spinal muscular atrophy: what it means for families

England will begin screening all newborns for spinal muscular atrophy from October 2026. Earlier diagnosis means earlier treatment. Here is what families need to know, and where physiotherapy fits.

On 16 July 2026, the UK government announced that newborn screening for spinal muscular atrophy (SMA) will be fully rolled out across England. Laboratories are due to begin screening from October 2026, with the programme eventually covering every baby born in England. Scotland introduced the same screening in March 2026.

This is a landmark moment for the SMA community, and one that has been campaigned for by families, clinicians, and charities for many years.

What is spinal muscular atrophy?

Spinal muscular atrophy is a genetic condition that affects the motor neurons in the spinal cord: the nerve cells responsible for sending signals from the brain to the muscles that control movement, breathing, and swallowing. Without those signals, muscles weaken progressively over time.

SMA is caused by a mutation in the SMN1 gene, which normally produces a protein called survival motor neuron (SMN) protein. A second gene, SMN2, can partially compensate, but only partially. The number of copies of the SMN2 gene a person carries influences how the condition presents: more copies generally mean a milder course.

There are different types of SMA. Type 1 is the most severe, with symptoms appearing in the first few months of life. Type 2 typically presents between 6 and 18 months. Type 3 presents in early childhood or later, with a milder course. SMA affects around 1 in every 6,000 to 10,000 babies born in the UK.

Why does early screening matter?

Until recently, SMA was most commonly diagnosed after a parent or health professional noticed that a baby was not meeting motor milestones: not sitting, not rolling, losing the ability to lift their head. By the time symptoms are visible, significant motor neuron loss has already occurred, and the window for the most effective intervention has narrowed.

The clinical evidence for presymptomatic treatment is clear: treatment started before symptoms appear produces substantially better outcomes than treatment started after. The biology explains why. Motor neurons that are preserved through early intervention function normally. Motor neurons that have already been lost cannot be recovered.

Newborn blood spot screening, which parents will know as the heel prick test, can identify SMA before any symptoms are present. Adding SMA to this test means that any baby born with the condition can be identified in the first days of life and referred for treatment before the condition has had the chance to cause significant damage.

What treatments are now available?

The treatment landscape for SMA has transformed over the past decade. Nusinersen and risdiplam both work by increasing the activity of the SMN2 gene, boosting production of the SMN protein and slowing or halting disease progression. Onasemnogene abeparvovec is a gene therapy that delivers a working copy of the SMN1 gene directly, and has been used in children who meet specific eligibility criteria.

None of these treatments is a cure, and the extent of their benefit depends significantly on when treatment begins and on the individual's SMN2 copy number and overall clinical picture. This is why screening matters: the earlier treatment starts, the more there is to preserve.

Where does physiotherapy fit?

Physiotherapy is not an alternative to disease-modifying treatment. It works alongside it. For children with SMA, physiotherapy is part of the clinical team from early on, and its role shifts as the child grows and as the effect of treatment becomes clearer.

In the early stages, physiotherapy focuses on positioning and postural management: supporting the spine, protecting developing joints, and ensuring that the baby's body is well supported in all positions. Physiotherapists work with families to understand how to position their baby safely at home, in car seats, in prams, and during feeding.

As children grow, physiotherapy addresses movement, strength, and function in ways that are appropriate to the individual child. For a child treated presymptomatically and achieving motor milestones, this may look more like developmental physiotherapy. For a child with more significant weakness, physiotherapy addresses respiratory management, equipment prescription including seating and standing frames, management of scoliosis risk, and maximising functional independence.

Physiotherapy for children with SMA is always family-centred. The most effective programmes are the ones woven into daily routines rather than confined to clinic appointments, which is why community-based physiotherapy delivered in the child's home is often the most meaningful for families.

What this means going forward

The families who will come through specialist paediatric physiotherapy services in the coming years will include children identified and treated from the first days of life. Their clinical profiles will be different from children diagnosed after symptom onset, and physiotherapy approaches will need to reflect that.

For families who already have a child with SMA, or who are navigating a new diagnosis, physiotherapy support does not have to wait for NHS waiting lists. Specialist community paediatric physiotherapy is available independently, and for families with case management support or a personal health budget, it can be commissioned directly.

We work with children with neuromuscular conditions including spinal muscular atrophy across South East London and Kent, with specialist assessment, individualised therapy programmes, and EHCP physiotherapy advice where needed.