For the third year in a row, we’ve increased our investment in research – backing more scientists, more ideas, and more potential to change the lives of people living with muscle wasting and weakening conditions.
This year, we’re investing £2 million into 13 pioneering research projects – bringing our total commitment to research to £9.6 million. Across more than 25 conditions, we’re now supporting 51 active projects that aim to deepen understanding, explore new treatments, improve care and make a meaningful difference to the lives of those living with muscle wasting and weakening conditions.
Expanding our reach
We’re funding research into VCP multisystem proteinopathy type 1 (VCP MSP-1) for the first time – a rare and often overlooked condition that affects muscles, bones and nerve cells. Symptoms can vary widely from person to person, but include muscle weakness, bone disease and memory issues.
There are currently no effective treatments and scientists still don’t fully understand all the processes that lead to this damage or the reasons behind the differing symptoms.
Two projects, one led by Professor Jordi Diaz-Manera at Newcastle University and the other by Dr Rebecca Jones at Aston University, focus on understanding more about the changes VCP MSP-1 cause inside the body. By building this knowledge, it could help scientists uncover new ways to treat the condition and lay the groundwork for future therapies.
“As someone from a family deeply affected by a VCP-related condition, I can’t overstate how much it means to see Muscular Dystrophy UK investing in this research. For years, VCP-related conditions have often felt overlooked, and many families like mine have been left with more questions than answers. To know that teams are now focusing on understanding how this disease works, and how it might one day be slowed or treated, brings real hope. These projects are a vital step towards a future where families like mine can look ahead with more optimism.”
Stuart
Whose family has been affected by VCP MSP-1
Supporting research across the UK
Muscle wasting conditions can affect anyone, anywhere – so research needs to happen everywhere too. That’s why we’re supporting new projects across the UK, including regions where less research happens.
One of the new projects we’re supporting is based in Northern Ireland, where access to advanced genetic testing has historically been more limited. For people like Roseagh, this has meant years of uncertainty, frustration, and feeling dismissed. Roseagh, from Lisburn, first experienced symptoms in her early teens, but still doesn’t have a confirmed diagnosis. She’s now preparing to travel up to 500 miles to London for further testing – a journey that could take up to a year to begin.
“For years, I had carried a deep sense of shame and embarrassment about my symptoms, feeling as though my body was betraying me […] When I finally found the courage to speak up, only to be dismissed, it left me feeling defeated.”
Roseagh
Living with a currently unknown muscle wasting condition
Sadly, Roseagh’s experience isn’t unique. That’s why we’re funding a new specialist clinic led by Dr Grace McMacken at Queen’s University Belfast. This clinic will support people with symptoms of a muscle wasting condition but who don’t have a confirmed genetic diagnosis.
The team will use new tools to look again at people’s DNA and find answers that may have been missed before. The goal is to help more people get the right diagnosis, care and support – and to make the clinic a permanent NHS service.
Investing in the next generation of scientists
We’re also taking a big step forward in how we support scientists at the very start of their careers. We’ve doubled the number of PhD students we’re funding, showcasing our commitment to training the next generation of researchers who will help drive progress in treatments and care.
But supporting new scientists isn’t just about funding projects. It’s about creating a community and giving them the tools they need to thrive. Throughout their training, we’ll be providing tailored support, including opportunities to connect, learn, and grow through events like our recent PhD Network Day.
“We’re proud to be increasing our investment in research year after year – reaching new areas, exploring more conditions, and supporting a growing community of scientists. This year’s projects reflect that ambition, with work that aims to improve lives today and shape the future of care and treatment. By doubling the number of PhD students we support, we’re also making a long-term commitment to the future of research into muscle wasting and weakening conditions.”
Dr Kate Adcock
Our Director of Research and Innovation
Our 2025 research grants
Understanding muscle weakness in VCP-associated multisystem proteinopathy
Dr Rebecca Jones and her PhD student at Aston University will explore how changes to a protein called VCP causes muscle weakness in people with VCP MSP-1.
Exploring how muscle damage spreads in VCP-associated multisystem proteinopathy
Professor Jordi Diaz-Manera is exploring how changes in the VCP gene can weaken muscles and how this damage spreads over time in people with VCP-associated multisystem proteinopathy type 1.
A new clinic for people still waiting for a genetic diagnosis in Northern Ireland
Dr Grace McMacken is setting up the first specialist clinic in Northern Ireland for people who have symptoms of a muscle wasting condition but don’t yet have a genetic diagnosis. The clinic aims to improve diagnosis, care, and access to treatment.
Creating a better MRI scan to test new treatments for FSHD
Dr Kieren Hollingsworth is developing a new MRI scan to measure muscle damage more clearly in FSHD, making it easier and faster to test potential treatments.
Improving how scientists identify new potential treatments for FSHD
Dr Virginie Mariot is exploring a new way to identify potential FSHD treatments, which could help scientists choose the most promising ones to take into clinical trials.
Developing a triple-action treatment for Duchenne muscular dystrophy
Dr Alberto Malerba and his PhD student are working on a new treatment for Duchenne muscular dystrophy that does three different jobs to help protect muscles and slow down how fast the condition gets worse.
Exploring how Duchenne muscular dystrophy begins to help treat it earlier
Professor Darek Gorecki is using frogs with a type of Duchenne muscular dystrophy (DMD) to explore how the condition begins and whether it could be treated earlier in life.
Studying how muscles develop in children diagnosed with SMA at birth
Professor Laurent Servais is studying how children with spinal muscular atrophy (SMA) grow and develop after being diagnosed at birth to help guide when treatment should start or be added.
Using virtual reality and soft robotics to make exercise easier and fun for children with SMA
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.
Learning more about distal and myofibrillar myopathies in the UK
Professor Giorgio Tasca and his PhD student are gathering vital information about distal and myofibrillar myopathies to help improve diagnosis, care, and support the development of future treatments.
Exploring new tools to correct gene changes in muscle wasting conditions
Professor Haiyan Zhou and her PhD student are exploring two ways to correct a type of gene change in muscle wasting conditions, which could lead to future treatments.
