Catherine’s son, Ezra, has spinal muscular atrophy (SMA) type 2. She shares the pain of watching him lose strength, the hope treatment has given their family, and why she believes every baby should be screened for SMA at birth.
Apitegromab, a new treatment designed to be used alongside some existing treatments for SMA has recently been approved in the US. However, the company behind the treatment does not currently plan to seek approval in the UK.
Shameem shares her story of living with limb girdle muscular dystrophy (LGMD), including her education and moving to the UK.
Novartis has announced Phase III trial results for del-desiran, an investigational treatment for myotonic dystrophy type 1 (DM1).
Get ready for an unforgettable cycling adventure in the heart of the Scottish Highlands. Join #TeamMDUK for Etape Loch Ness 2027 and take on 66 miles of traffic-free roads around one of Scotland’s most iconic landscapes.
Our largest ever Bidwells Cambridge 10k and junior 3k took place on Sunday 4 October. Over 4,500 runners signed up, from elite runners competing for a personal best to schools, colleges, corporate teams and those with a personal reason for taking part.
Scott lost his brother, and best friend, Craig, to Duchenne muscular dystrophy when they were young adults. Now, Scott is drawing on his own experiences of grief and loss to create ‘Where the Shadow Ends’, a short film inspired by his relationship with Craig.
Join our WhatsApp and Facebook online groups as a Community Support Volunteer.
We’re delighted to open nominations for our Stronger Together Awards, which will recognise and honour outstanding people in our community. You have until Sunday 1 November 2026 to nominate.
Today, Thursday 1 October, marks a defining moment for newborn screening as the first laboratory in England will start testing for spinal muscular atrophy (SMA) to assess the feasibility of adding it to the NHS newborn blood spot test on a permanent basis. However, as England follows Scotland, who started screening in March, there are currently no plans in place in Wales or Northern Ireland.