Emily took on the challenge in memory of her older brother Joe, who lived with Duchenne muscular dystrophy and sadly died in 2021 aged 28. Emily tells us about her brother and the challenge.
After Dani’s SMA type 1 diagnosis, her dad Charlie explains why newborn screening matters for every baby in the UK
OAV101-IT could give more people with SMA access to a one-time gene therapy treatment. Further evidence will now be considered before a final recommendation is made about routine NHS use in England.
Learn about community, representation and living with GNE myopathy as a South Asian woman, this South Asian Heritage Month.
Last week, Muscular Dystrophy UK attended the International Congress on Neuromuscular Diseases (ICNMD) in Florence, bringing together researchers, clinicians, industry and patient organisations from around the world.
Following last month’s debate in Parliament, today, Thursday 16 July 2026, the UK government announced that newborn screening for spinal muscular atrophy (SMA) will be fully rolled out across England. This means that every baby in England will get tested for SMA while a national evaluation programme runs to see if the condition should be permanently added to the NHS newborn blood spot test (formerly called the heel prick test).
We are launching the neuromuscular service mapping project – helping provide strong evidence to campaign for better neuromuscular services.
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For Ullrich Awareness Day, Amelie’s mum shares how the right diagnosis, specialist support and a determination to focus on what Amelie can do have shaped their journey.