Newborn screening for spinal muscular atrophy

Newborn screening is the quickest route to a diagnosis of spinal muscular atrophy (SMA). Early treatment is vital to preventing permanent damage. Without newborn screening, too many babies are only diagnosed when they start to show symptoms, missing out on life-changing treatments.

If babies don’t receive treatment early, SMA symptoms progress quickly and life expectancy is estimated at less than two years. Babies who do survive can’t walk, and the majority are reliant on tube feeding and ventilation support. It doesn’t have to be this way.

The evidence is convincing, and the case is clear: every baby in the UK must be screened for SMA now.

“Chester needs a ventilator to breathe when he’s asleep or unwell. He has to be fed through an NG [nasogastric] tube because he can’t eat orally. He can’t sit unaided or hold his own head up. The future is so uncertain for Chester, but if SMA was included in the newborn screening heel prick test, he could have received treatment from birth, and he’d have a very different life.”

Kasey, Chester’s mother

We need change now. Join Jesy Nelson in urging the UK government to act now and speed up the introduction of newborn screening for SMA.

Sign the petition

Scotland

Scotland has already started to test all babies born in Scotland through a pilot programme. This programme is due to end in 2028.

England

A programme to test approximately two thirds of babies will start in October 2026. But more needs to be done so every baby is tested. England needs to expand its screening programme.

Northern Ireland and Wales

Currently there’s nothing planned in Wales or Northern Ireland. The government must commit the necessary resources so that every baby in these nations can be screened for SMA.

What we’re calling for

In England, the government must provide funding and a clear plan to screen all babies for SMA by the end of 2027.
In Wales and Northern Ireland, the governments must commit to and put in place a plan to screen all babies for SMA by 2028.
In Scotland, the government must commit to continuing newborn screening once the two-year pilot ends in 2028.

Sign the petition here

Why we need newborn screening

"It took 23 appointments to diagnose my son with SMA type one"

It took Kelsey 23 appointments with nine different doctors to get answers. Find out how their future could have been different if newborn screening was in place for SMA.

Scotland leads the way: Newborn screening for SMA

All babies in Scotland who have the NHS newborn blood spot test will be offered screening for spinal muscular atrophy (SMA) in addition to the existing ten conditions.

Learn more

Newborn screening for spinal muscular atrophy

What’s happening now

What we’re calling for

Why we need newborn screening

Stay connected with our community