Key facts
- England will implement universal newborn screening for spinal muscular atrophy (SMA).
- SMA is a genetic disease causing progressive muscle weakness, potentially impacting movement, breathing, and swallowing.
- Early intervention with gene therapies is crucial for SMA, as they must be administered before symptoms appear.
- Singer Jesy Nelson, whose daughters have SMA, welcomed the screening program as a significant advancement.
- The nationwide screening is expected to begin in October 2026, with full implementation by October 2027.
England is set to introduce universal screening for spinal muscular atrophy (SMA) for all newborn babies as part of a major study. SMA is a rare genetic disorder that leads to progressive muscle weakness, affecting a baby's ability to move, swallow, and breathe. In its most severe forms, it can be fatal before the age of two. However, pioneering gene therapies exist that can correct the genetic defect, but they are most effective when administered before symptoms manifest. Singer Jesy Nelson, whose twin daughters Ocean Jade and Story Monroe Nelson-Foster have SMA and require spinal jackets and foot splints, described the announcement as a "victory for every family" affected by the condition. She previously shared that her daughters were told they would "probably never walk." Screening for SMA is already in place in Scotland. The new program in England is slated to become available in most areas starting in October 2026, with a full rollout anticipated by October 2027. This initiative follows earlier plans that would have only covered 72% of England, which had drawn controversy. The test involves a blood sample taken via a heel prick shortly after birth. Nelson expressed her pride in supporting the initiative, stating, "Today is a day of hope." Health Secretary James Murray commended the campaigners for their efforts in raising awareness, acknowledging 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."