The voice of clinicians sits behind all the social media and PR hype - thank you

Newborn screening for Spinal Muscular Atrophy (SMA) in the UK is not just the result of recent advocacy and social media/press attention, it is the result of years of relentless commitment to research by clinicians who refused to let this be overlooked.

Research began as early as 2013 with Dr Felicity Boardman’s Imagining Futures study, laying important groundwork for understanding the impact and importance of screening.

For over a decade, doctors and researchers have worked quietly and persistently behind the scenes. From early trials to full pilot programmes, they have built evidence where there was none, challenged decisions, reworked data, and continued even when progress stalled and the answer was “not yet.”

Figures such as Professor Laurent Servais, Professor Francesco Muntoni, Mariacristina Scoto, and many others across centres including Oxford, Great Ormond Street, and Sheffield have dedicated years of their careers to this. Not for recognition, but because they understood what early diagnosis could mean.

This has not been straightforward work. It has meant long studies, complex trials, and constant pressure to prove that screening is not only possible, but essential. It has meant carrying responsibility knowing that behind every data point is a child, a future, and an opportunity to change outcomes.

Over 34,000 babies have now been part of pilot screening programmes in the UK, helping to build the evidence needed to move forward. We thank those families for participating.

The newborn screening pilots, their expansion across regions, and the progress we are now seeing did not happen by chance. They are the direct result of clinicians who kept going, who advocated, collaborated, and pushed forward even when progress felt slow.

This is what dedication looks like. Years of expertise, persistence, and sacrifice poured into something that will change lives long after the work itself is done. Whilst there is no denying that the recent advocacy helped to get the attention of parliament which led to a faster implementation of the scheme, we thought it imperative that everyone who has worked tirelessly for over a decade also got a mention too. 

We are so close now because they have not given up. We will not settle; we will continue to push for full national screening, removing the postcode lottery on lives.