Jesy's petition to speed up the introduction of newborn screening for SMA

13 February 2026

Last month, Jesy Nelson shared her twin daughters’ diagnosis, and she has now started a petition to get SMA added to the NHS newborn screening test.

There’s a treatment for spinal muscular atrophy (SMA) that can change lives. But time is of the essence. Once nerve cells are lost, so too are muscles, movement, independence. With an early diagnosis shortly after birth, treatment can mean the difference between a child being able to walk and breathe independently or not.  

Following the sad news shared last month about her twin daughters’ diagnosis, Jesy Nelson has started a petition urging the UK government to review the evidence and get SMA added to the NHS newborn screening test. This is something that Scotland will begin offering this year, but it’s vital that the rest of the UK follows, and fast. 
 
Along with partners like SMA UK, this is something we’ve long been campaigning for as the UK continues to fall behind the growing number of countries screening for SMA at birth. And the cost of adding SMA to the existing newborn screening test? Just £4-£5 per baby. 
 
With a condition like SMA, time is everything. Each day without screening means more families facing a heartbreaking diagnosis that could have been avoided. No family should have to go through this when early detection can change everything. 

We’re grateful to Jesy for using her voice and platform to shine a light on this vital issue. 

As of Thursday 26 February, the petition has now reached over 147,000 signatures. The government will now respond to the petition, with a date for a debate about the petition expected to be announced soon.