Feb 13 • 18:08 UTC 🇬🇧 UK Mirror

‘Every moment matters to SMA babies - we must act now to change their futures’

Charity leader Giles Lomax advocates for mandatory spinal muscular atrophy testing for newborns in the UK to improve early diagnosis and treatment options for the disease.

Giles Lomax, a prominent charity figure, is campaigning for a mandatory screening program for spinal muscular atrophy (SMA) in the UK, highlighting the critical importance of early diagnosis for affected infants. Lomax, who has twins impacted by Type 2 SMA, emphasizes that early intervention can significantly change the trajectories of these children's lives, whereby treatments available today can prevent further muscle degeneration caused by the disease. With the backing of former Little Mix singer Jesy Nelson, the campaign seeks to amplify awareness and push for legislative change.

In a recent rallying cry, public health advocates and families affected by SMA have come together, pushing for the UK National Screening Committee to reconsider current screening practices. Health Secretary Wes Streeting is being urged to support the proposed newborn blood tests that could catch SMA at birth rather than waiting for symptoms to develop, which often leads to devastating consequences for families. The campaign has seen a surge in public interest, partly fueled by personal stories that resonate with the wider community, underscoring the urgency of acting sooner rather than later.

If the screening is implemented, it may improve outcomes for many children with SMA. Current treatments can correct genetic errors or supplement missing proteins that help maintain muscle function. Lomax's own experience with his twins, who received their diagnosis later than ideal, serves as a poignant reminder of the need for immediate action to protect future generations of SMA sufferers. The hope is that by establishing a proactive screening program, the landscape for managing SMA can improve dramatically, ultimately changing lives for the better.

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