SMA Screening Urgent After Celebrity Spotlight

Published: 11 January 2026. The English Chronicle Desk. The English Chronicle Online.

Calls for newborn SMA screening have been repeatedly overlooked, despite families’ urgent appeals, until former Little Mix star Jesy Nelson recently highlighted the issue. When Nelson revealed her twins had spinal muscular atrophy type 1 (SMA1), a rare genetic disorder causing muscle wasting, public attention turned sharply toward the need for newborn testing. Health Secretary Wes Streeting acknowledged the problem, agreeing Nelson had a right to challenge delays in diagnosis and emphasising plans to expand genomic medicine. Yet many families affected by SMA feel ignored, despite campaigning tirelessly for years before celebrity involvement.

Portia Thorman, head of advocacy at SMA UK, explained that she has pushed for newborn SMA screening for over four years. Her son Ezra, diagnosed with SMA1 after critical illness as a newborn, received treatment only after an extended struggle navigating the healthcare system. “We have written letters and tried to engage parliamentarians, but it feels like rare conditions are dismissed unless they gain media attention,” Thorman said. She recalled inviting Streeting to observe an SMA pilot study at Oxford, which he declined, highlighting long-standing frustration among families and charities.

Amy Moffatt, whose son Oakley was diagnosed with SMA1 at ten weeks old, echoed these concerns. Despite extensive advocacy, she says her family’s pleas for government action were overlooked until Jesy Nelson’s announcement sparked national interest. Oakley’s condition required immediate gene therapy, halting deterioration but leaving him dependent on ongoing care and physiotherapy. Fundraising through Tree of Hope has been essential to meet the costs associated with his support. “We’ll have to explain one day how early screening could have changed everything for him,” Moffatt said, emphasising the profound difference newborn SMA screening could make.

SMA causes progressive weakening of muscles, affecting mobility, breathing, and swallowing. Type 1 is the most severe, and untreated infants rarely survive beyond two years. While England does not currently include SMA in its newborn screening programme, the UK National Screening Committee is reassessing this, and Scotland plans to begin screening in April. Internationally, countries such as the US, Germany, Japan, and Ukraine already screen newborns, reflecting the global recognition of early intervention benefits. Approximately 10,000 to 14,000 infants worldwide are born with SMA annually, underlining the importance of timely detection.

Molly Everitt, 23, living with SMA type 3 and studying medical law at Liverpool University, highlighted another issue: public perception. “Media narratives focus too heavily on the difficulties, ignoring the achievements of people with SMA who lead fulfilling lives,” she said. She described the sudden visibility following Jesy Nelson’s announcement as surreal, noting that advocacy over many years had previously failed to gain widespread attention. Families like hers feel the celebrity spotlight has propelled public understanding but also underscored frustrations over delayed government action.

Charlie Mosey, whose son Rupert received early gene therapy for SMA1, described the experience as bittersweet. “It’s wonderful Jesy has helped raise awareness, but sad it required a celebrity to bring this issue into public discussion,” she said. The family has raised over £500,000 for SMA clinical trials, highlighting both their dedication and the persistent need for systemic support. Mosey stressed that early newborn testing could have dramatically altered Rupert’s prognosis, showing the tangible life-saving benefits of timely SMA screening.

A Department of Health and Social Care spokesperson acknowledged families’ frustration, stressing the importance of ongoing research. The UK National Screening Committee has recommended a large-scale study into newborn SMA screening, with a research call now active. “Hundreds of thousands of babies will be screened as part of NHS trials, and we will continue collaborating with charities, clinicians, and families,” the spokesperson said, indicating incremental progress despite long-standing advocacy efforts.

While Jesy Nelson’s involvement has elevated SMA to national headlines, families emphasize the broader issue: systemic delays in recognising rare conditions can have life-altering consequences. Their experiences highlight the urgency of implementing widespread newborn SMA screening, ensuring infants receive treatment before symptoms progress. Activists continue to campaign tirelessly, hoping that lessons learned from media attention will translate into enduring policy change. The recent wave of publicity has renewed public interest, while families remain focused on achieving practical outcomes that could save lives and improve quality of care for SMA patients across the UK.

The renewed debate around SMA also shines a light on the broader challenges facing rare disease advocacy, including unequal media coverage, limited government attention, and the emotional toll on families. Campaigners hope this moment will catalyse sustained action, transforming the current system so that no child suffers delayed treatment simply because their condition is uncommon. Public awareness, celebrity advocacy, and systematic research together provide hope that newborn SMA screening will finally become standard practice, giving future generations a significantly improved prognosis.

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