Jesy Nelson’s Campaign Paves the Way for SMA Screening for 755,000 Newborns in England
Little Mix star Jesy Nelson has achieved a major breakthrough in healthcare following the diagnosis of her twins, Ocean Jade and Story Monroe, with spinal muscular atrophy (SMA), a serious genetic condition that causes progressive muscle wasting, breathing difficulties, tremors, and joint problems.
Nelson has long campaigned for SMA to be included in newborn blood spot screening, highlighting the importance of early detection and intervention. Her advocacy has led to a new study in England that will assess whether SMA should be routinely added to post-birth checks, potentially transforming the lives of thousands of infants.
The study, funded by the National Institute for Health and Care Research (NIHR) and led by Professor Laurent Servais at the University of Oxford’s Department of Paediatrics, is set to begin in August. Up to 755,000 newborns across England will be screened in a phased approach across seven NHS laboratories, covering around two-thirds of births. Researchers will compare outcomes between screened and unscreened infants, with final results expected in 2031.
Professor Servais emphasised the importance of early intervention: “This study represents a decisive step towards ensuring that every child born with SMA in the UK has the opportunity to be diagnosed and treated before irreversible damage occurs. We now have therapies that can fundamentally change the trajectory of this disease if we identify affected infants early.”
SMA UK chief executive Giles Lomax added: “For families affected by SMA, time is everything. Early diagnosis through newborn screening can mean the difference between a life severely limited by disability and one with far greater independence and opportunity.”
Since revealing her daughters’ diagnosis in January 2026, Jesy has campaigned tirelessly for change, gathering over 100,000 petition signatures and meeting Health Secretary Wes Streeting at 10 Downing Street to advocate for nationwide screening. She described the diagnosis as devastating, noting that her twins may never be able to walk or regain neck strength.
The new screening initiative represents a historic step forward, giving families affected by SMA a better chance at early treatment and a brighter future. Jesy Nelson’s determination has brought national attention to the condition, turning her personal struggle into a campaign with the potential to save thousands of lives.
