Parents Push for Newborn SMA Screening in UK
Update: 2026-01-05
Description
Parents of children with Spinal Muscular Atrophy (SMA) in the UK are advocating for newborn screening, sharing heartbreaking stories of delayed diagnoses. Seven-year-old Dani-Rae Brown and two-year-old Lucian Neale, both with SMA, experienced late diagnoses, leading to severe muscle loss and health complications. SMA, a progressive condition affecting muscles, breathing, swallowing, and movement, can be fatal if untreated. Treatments are available but most effective before symptoms appear. The Welsh government follows UK National Screening Committee advice, which does not yet recommend routine SMA checks for newborns. A pilot program was approved in February 2025, but rollout is delayed without full NHS England buy-in. Charity SMA UK emphasizes the importance of early detection to prevent irreversible damage and enable pre-symptom treatment, offering hope for routine tests through genomic screening evaluations like the NHS Generation Study.
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