Welcome to SMA UK
“Children with debilitating genetic condition denied early life-changing test”
Victoria Macdonald, Channel 4’s Health and Social Care Editor talks to Giles Lomax, CEO of SMA UK, highlighting the need for newborn screening in the UK on Channel 4 News (24th July 2025). Our thanks go out to Dr Giovanni Baranello, Professor of Paediatric Neromuscular Disorders at Great Ormond Street Hospital and Dharmesha and Kuba Stezaly for sharing their son Seb’s story in this powerful piece.
Community Support
Since 1985, we have worked with the SMA Community to ensure that everyone affected by SMA has access to the best care, support and treatments and that research continues to bring much needed breakthroughs.
Our Community Support Team can provide both practical and emotional support.
Contact our Community Support Team >
Find out more about the work we do
Fundraising
News
Treatments & Research
SMA in numbers
271
Families and adults living with SMA we’ve supported in 2024
51
Families and adults receiving wheelchairs through SMArt Moves Grants in 2024
97
Families and adults getting support through FleixGrants in 2024
Support our work
£5
per month
Could help fund a phone call with a member of our Outreach Team for a family who have just received a diagnosis of SMA
£10
per month
Could make a valuable contribution to funding our Health Information Officer who ensures that our information on treatments and clinical trials is up to date
£15
per month
Could help us to put on a event where the SMA Community can connect and share experiences