The NorthStar programme is the world’s largest natural history study of boys and men with Duchenne muscular dystrophy (DMD) and a clinical network of UK-wide healthcare professionals focusing on the best clinical management of DMD.
The LifeArc Centre for Rare Mitochondrial Diseases (LAC-TreatMito), led by Professor Patrick Chinnery at the University of Cambridge, aims to improve diagnostics and develop treatments for mitochondrial diseases.
Professor Jordi Diaz-Manera and his team at Newcastle University will enhance the MYO-Guide diagnostic tool they previously developed which brings together the power of magnetic resonance imaging (MRI) and artificial intelligence (AI) to diagnose more muscle wasting conditions with greater accuracy. We supported the development of the MYO-Guide diagnostic tool.
Professor Liang He is creating a new tool for children with spinal muscular atrophy (SMA) that uses soft robotics and virtual reality to support movement and make physiotherapy more fun.
When Esmae and Grace were diagnosed with limb-girdle muscular dystrophy 2A (LGMD2A), their dad Dean was determined to help. After his daughter’s application for Personal Independence Payment (PIP) was rejected, Dean turned to MDUK’s free helpline for some much-needed support.
Since raising money for mobile arm supports, 18-year-old Tomasz can now once again lift his arms up to do things like feed himself, pick up his phone and give someone a hug.
On 21 September, Nathan Franklin and his friend Tom Grassby ran 53 miles – the equivalent of two marathons – from Leeds to Hull. Inspired by Nathan’s younger brother Jack who lives with Duchenne muscular dystrophy, they raised over £7,000 and completed the run in 12 hours 5 minutes. Nathan tells us about the challenge.