Families affected by spinal muscular atrophy type 1 (SMA1) have expressed frustration that their calls for newborn screening were ignored before former Little Mix star Jesy Nelson's campaign brought attention to the issue. The health secretary, Wes Streeting, was quick to respond to Nelson's announcement, but many families say they had been trying to raise awareness about SMA screening for years.
Portia Thorman, head of advocacy and community at SMA UK, said she has been campaigning on this issue for over four years, writing letters to the health secretary and attending meetings with parliamentarians. Her nine-year-old son, Ezra, was diagnosed with SMA1 at a young age and required intensive care before treatment could begin.
Thorman described the lack of progress as "a complete act of neglect" and said she felt vindicated when Nelson's campaign brought attention to the issue. Amy Moffatt, whose five-year-old son Oakley has SMA1, also expressed frustration that it took a celebrity to raise awareness about the condition. Moffatt had to battle to get her son's symptoms taken seriously before he received treatment.
Molly Everitt, who has SMA type 3, said the media narrative around the condition had been negative and focused too heavily on its downsides. She wanted to highlight that people with SMA can live full lives and achieve great things.
Charlie Mosey, mother to four-year-old Rupert, who also has SMA1, felt that it was "bittersweet" that Nelson's campaign had raised awareness about the condition. However, she believed it was a shame that it took a celebrity to get the issue into the media.
A Department of Health and Social Care spokesperson acknowledged the concerns of families affected by SMA and said they would continue to work with charities and clinicians as research into newborn screening progressed. The UK National Screening Committee has recommended a large-scale study into newborn screening, and hundreds of thousands of babies will be screened for SMA as part of this trial.
In contrast to England, where newborn screening is not available, countries such as the US, Germany, Japan, and Ukraine have introduced screening programs, resulting in around 10,000-14,000 babies being diagnosed with SMA each year worldwide.
Portia Thorman, head of advocacy and community at SMA UK, said she has been campaigning on this issue for over four years, writing letters to the health secretary and attending meetings with parliamentarians. Her nine-year-old son, Ezra, was diagnosed with SMA1 at a young age and required intensive care before treatment could begin.
Thorman described the lack of progress as "a complete act of neglect" and said she felt vindicated when Nelson's campaign brought attention to the issue. Amy Moffatt, whose five-year-old son Oakley has SMA1, also expressed frustration that it took a celebrity to raise awareness about the condition. Moffatt had to battle to get her son's symptoms taken seriously before he received treatment.
Molly Everitt, who has SMA type 3, said the media narrative around the condition had been negative and focused too heavily on its downsides. She wanted to highlight that people with SMA can live full lives and achieve great things.
Charlie Mosey, mother to four-year-old Rupert, who also has SMA1, felt that it was "bittersweet" that Nelson's campaign had raised awareness about the condition. However, she believed it was a shame that it took a celebrity to get the issue into the media.
A Department of Health and Social Care spokesperson acknowledged the concerns of families affected by SMA and said they would continue to work with charities and clinicians as research into newborn screening progressed. The UK National Screening Committee has recommended a large-scale study into newborn screening, and hundreds of thousands of babies will be screened for SMA as part of this trial.
In contrast to England, where newborn screening is not available, countries such as the US, Germany, Japan, and Ukraine have introduced screening programs, resulting in around 10,000-14,000 babies being diagnosed with SMA each year worldwide.
! Families affected by SMA1 have been fighting for newborn screening for YEARS 
and it's like their voices were completely ignored until Jesy Nelson stepped in 
. I mean, Portia Thorman has been advocating for this since 2022 and she's had to deal with all the emotional ups and downs of watching her son struggle with SMA1 
. It's just so frustrating that it took a celebrity to get people's attention 
I mean, it's not fair that they're having to relive the struggle of getting treatment for their children because of a lack of awareness 
.
. Like, couldn't they have just listened to Portia Thorman and the other families who've been fighting for this all along? 
. Let's hope it brings about some real change 
. But seriously, can't we just have access to accurate diagnosis and treatment like everyone else? 
but at least now we're finally moving forward! It's crazy how sometimes it takes a high-profile celeb like Jesy Nelson to get things done, but I guess that's the power of public attention 
️!
. Portia Thorman has been campaigning fer like, 4 yrs now & she just feels so vindicated now 
. her son Ezra needs intensive care 2 b diagnosed & treated ASAP. its a shame that some ppl think SMA is all bad news 
. and yeah, its bittersweet 4 Charlie Mosey's fam since Nelson's campaign brought attention 2 the issue 
. anyway, at least thngs are movin forward n a study wiv newborn screening is goin 2 happen 
. And what really gets me is that some people are saying it's a "bittersweet" win because a celeb brought attention to the issue 
. Um, no, it's not bittersweet, it's just plain frustrating that it took someone else to make things happen 
. We need more awareness and action on this NOW 
!
. anyway, back to sma... it's crazy how much progress is being made now that a celeb has brought attention to it 
. but seriously though, shouldn't these ppl have been working on this 4+ years ago? 
. at least now we're getting some action taken tho 
Molly Everitt said that perfectly. I'm just so frustrated that it took someone famous to get the government's attention. This needs to change ASAP 
. And Molly Everitt's point about the media narrative being negative is totally valid - we need to shine a light on all the amazing things people with SMA can achieve!