Babies born today with spinal muscular atrophy (SMA) don’t have time to wait.
Without newborn screening, babies are being diagnosed too late to receive effective treatment to prevent permanent muscle damage. Many will never take their first steps freely and will rely on feeding tubes and equipment to help them breathe.
We must act now. We urgently need every baby in the UK to be screened for SMA shortly after birth. We can’t sit by while delayed diagnosis can steal a baby’s first steps, first milestones and future opportunities.
“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
The Northern Ireland government is still failing to act for newborn screening. This isn’t right. But we need your help to change this – we want to meet with your MLAs to talk about what they can do to help.
There is still no newborn screening for SMA in Wales. We’re meeting the Deputy Health Minister at the end of October. If you’re living in Wales and are affected by SMA, we’d love to hear from you.
A programme to screen some newborns started on 1 October 2026. All babies across England will be offered SMA screening by spring 2028 in a phased roll-out. The programme will assess whether to offer newborn screening for SMA permanently.
Scotland has already started to test all babies born in Scotland through a pilot programme. This programme is due to end in 2028.
It took Kasey 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.
Dani’s dad, Charlie, shares their family’s story to show why every baby in the UK deserves the same chance as those in England and Scotland through newborn screening for SMA.
Catherine’s son, Ezra, has spinal muscular atrophy (SMA) type 2. She shares the pain of watching him lose strength, the hope treatment has given their family, and why she believes every baby should be screened for SMA at birth.
