All newborn babies across England are set to undergo screening for Spinal Muscular Atrophy (SMA), a severe genetic condition, as part of a significant new study. The announcement has been warmly welcomed by campaigners, including former Little Mix singer Jesy Nelson, who described it as a 'victory' for every family affected by the disease.
SMA is a condition that causes progressive muscle weakness, impacting essential functions such as movement, breathing, and swallowing. In its most severe forms, the disease can be fatal before a child reaches two years of age. However, the landscape for SMA treatment has been transformed by pioneering gene therapies, which can correct the underlying genetic defect. Crucially, these treatments are most effective when administered before symptoms manifest, as they cannot reverse damage that has already occurred, underscoring the importance of early diagnosis.
Jesy Nelson has been a vocal advocate for widespread newborn screening since her twin daughters, Ocean Jade and Story Monroe Nelson-Foster, were diagnosed with SMA. Earlier this year, Nelson shared her heartbreak, revealing that her daughters had been told they would 'probably never walk' and recently posted about their need for spinal jackets and foot splints during a heatwave. Her forthcoming documentary, 'Jesy Nelson: Life Changing', is expected to further highlight the challenges faced by families living with SMA.
The implementation of SMA screening will commence in most parts of England from October 2026, initially as part of the study, with a full national expansion anticipated by October 2027. This follows earlier proposals that would have seen screening limited to only 72% of England, which had drawn considerable controversy. The test itself is a straightforward heel prick, taking a small blood sample shortly after birth.
Health Secretary James Murray expressed his admiration for the campaigners, stating he was 'in awe' of their efforts to raise awareness. He emphasised the government's commitment, noting that 'No parent should have to watch their child lose the ability to move or breathe, knowing that earlier treatment could have made all the difference.' The study, led by scientists at the University of Oxford, will involve screening hundreds of thousands of babies and will be crucial in helping the UK National Screening Committee make a final decision on whether SMA testing should become a permanent part of routine newborn care.