Muscular Dystrophy UK

Muscular Dystrophy UK We’re here for everyone living with and affected by muscle wasting and weakening conditions.

Muscular Dystrophy UK (previously known as the Muscular Dystrophy Campaign) is the charity bringing individuals, families and professionals together to beat muscle-wasting conditions. Founded in 1959, we have been leading the fight against muscle-wasting conditions since then. We bring together more than 60 rare and very rare progressive muscle-weakening and wasting conditions, affecting around 11

0,000 children and adults in the UK. We support high quality research to find effective treatments and cures and won’t stop until we have found them for all muscle-wasting conditions. We are leading the drive to get faster access to emerging treatment for families in the UK. We ensure everyone has the specialist NHS care and support they need – the right help at the right time, wherever they live. We provide a range of services and resources to help people live as independently as possible.

Collaborating on research to change the future of collagen VI muscular dystrophies🌟Today is World Collagen VI Day, dedic...
06/06/2026

Collaborating on research to change the future of collagen VI muscular dystrophies🌟

Today is World Collagen VI Day, dedicated to raising awareness about a spectrum of conditions which includes Ullrich musculary dystrophy and Bethlem myopathy.

A member of our research team is part of an international collagen VI working group, which brings together patient organisations, researchers and funders from around the world - including Fundación Noelia in Spain, CURE CMD in the USA, and Collagene VI Italia in Italy.

The group first met in 2023, and has stayed connected since then to share research updates, ideas and opportunities for collaboration.

We’re proud to support and contribute to this growing international network, as well as supporting vital research such as:
• Dr Carsten Bonnemann developing new methods of drug delivery for collagen VI-related muscular dystrophy
• Dr Haiyan Zhou developing advanced molecular patch therapy for collagen VI-related congenital muscular dystrophy

By working together, we can change the future of muscle wasting conditions 🧡

05/06/2026

"Volunteering and talking to other people does a lot for my mental health." 🧡

As comes to a close, we want to talk about how rewarding giving back can be.

Spending a little bit of your time can make the world of difference for someone else.

But it can also have an impact on you, from providing a sense of purpose to discovering a new community.

There are so many ways you can get involved - online, in person, one-off or a regular commitment.

Get involved: https://loom.ly/xuoNIE8

04/06/2026

The power of movement – no matter how you move 🧡

Just over a month ago, two members of our community took on the TCS London Marathon using our specialised race wheelchairs, alongside their incredible support teams.

Kiera described the experience ‘out of this world’ and something she never thought would be possible, encouraging anyone who’s thinking about it to give it a go.

Whether you’re running, walking, wheeling or being pushed, this is an experience that can be for everyone.

The assisted wheelchair ballot opens this July. If you are lucky enough to secure a place, let us know - we’d love to support you to the start line.

Find out more about the assisted wheelchair ballot: https://loom.ly/5WpQmEw

"We simply couldn't do what we do without them."Our volunteers give their time freely in so many different ways. The imp...
03/06/2026

"We simply couldn't do what we do without them."

Our volunteers give their time freely in so many different ways. The impact they make is massive, from supporting others when they most need it, to helping with vital fundraising events.

Kiera, our Head of Challenge Events and Community Fundraising, shared just how big an impact volunteers have for our community:

"They go above and beyond to support our events, raise vital funds, and champion awareness of muscle wasting conditions in their communities - all in their own time.

"They truly are an extension of our team."

Whether you’re supporting someone after diagnosis, fundraising in your local community, sharing your experiences, helping shape research or creating welcoming spaces for others, you're a part of something bigger.

You help make sure nobody has to face a muscle wasting condition alone.

Thank you 🧡

Read more about how volunteering makes a difference: https://loom.ly/Z6s3Gqw

People deserve better. You deserve better.Too many people living with a muscle wasting condition struggle with the curre...
02/06/2026

People deserve better. You deserve better.

Too many people living with a muscle wasting condition struggle with the current Personal Independence Payment (PIP) and Adult Disability Payment (ADP) benefits system.

Disabled people face higher costs that PIP and ADP should be helping cover - but all too often they fall short.

The system often doesn't meet people's needs, and is hard to navigate.

The UK and Scottish governments are currently looking at reforming PIP and ADP. The decision makers can and should build a fairer system that offers security and understanding - instead of uncertainty and fear.

Together, we must urgently demand a better benefits system across the UK. One that recognises all the needs of the muscle wasting community, and people’s right to live independently and with dignity.

It's time for change.

Sign the petition: https://loom.ly/dyEx-m0

02/06/2026

"I remember trying to join a Mother’s Day group, only to be told it was for people who’d lost their mums, not those who’d lost a child."

We often avoid talking about grief - but sometimes talking is the only way to heal.

Alex's son Declan lived with Duchenne muscular dystrophy. He loved cars, and they always went on road trips together.

"We’d just get in the van, take random lefts and rights, and see where we ended up. No plan, just the two of us exploring the world our own way."

Since Declan passed, his beloved van has taken on new life.

Intent on finding a space to talk openly about her loss, Alex set up The Functioning Griefster podcast, recording out of Declan's van and talking to others about their stories of love and loss.

In this month's Muscles Matter podcast, Alex joins our host Jackie Monroe to talk about her bond with Declan and how her podcast has helped her process grief.

You can listen here: https://loom.ly/Byk3gyA

Volunteers are at the heart of everything we do ✨From helping us make decisions that best serve everyone, to raising fun...
01/06/2026

Volunteers are at the heart of everything we do ✨

From helping us make decisions that best serve everyone, to raising funds and ensuring our community feels connected and supported.

We rely on so many amazing people who freely give their time to help change the future of muscle wasting conditions.

This , we want to recognise every contribution, no matter how big or small.

We really couldn't do it without you - thank you 🧡

30/05/2026

"By expressing myself and putting my words out there, I've been able to find a family out there."

This , we want to celebrate the power of creativity to build community and connection.

Joe Logue is a writer and poet who lives with Becker muscular dystrophy.

He won the Community Support Champion award at the 2026 Stronger Together Awards, in recognition of his work writing as Dystrophy Dad, as well his role at Euan's guide, reviewing the accessibility of transport hubs and popular destinations.

"Writing in any respect is self-expression, something that goes a great way to supporting my mental health.

"Life with muscular dystrophy is challenging, but there’s no greater purpose for pain than art."

Read more about Joe's writing: https://loom.ly/O-NAhZY

"Despite everything she faces every single day, she’s the strongest, most determined little girl - and without a doubt, ...
29/05/2026

"Despite everything she faces every single day, she’s the strongest, most determined little girl - and without a doubt, the bravest person I know."

Louise noticed a few small things about her daughter Deedee after she was born. She was a little floppy, needed support with breathing, and she struggled feeding.

Then, a few serious infections saw her placed in intensive care and a coma to support her breathing when she was still very small. But tests struggled to narrow down the underlying cause of Deedee's difficulties.

"After three and half years and further testing, we got our long-awaited answers and a confirmed diagnosis of nemaline myopathy.

"You never want your child to get diagnosed with a serious health condition. But after discovering what we’re finally dealing with, it gave us a bit of relief.

"It gives you hope, that should there be trials in the future, or treatments available, that she can now be involved."

But now Louise has done something incredible to help raise funds for people like Deedee - walking 249,000 steps in just one month.

"The number of steps in my challenge has a special meaning as Deedee has a mutation on the NEB gene that has never been seen before.

"The goal of 249,000 steps reflects the 249 kilobases of the NEB gene, and this gave every single step a powerful connection to the research it supports."

Read more: https://loom.ly/4sqg-CA

Want to know more about Givinostat being approved for Duchenne muscular dystrophy?Hear from leading clinicians and patie...
28/05/2026

Want to know more about Givinostat being approved for Duchenne muscular dystrophy?

Hear from leading clinicians and patient groups, and have your questions answered at a joint webinar, hosted by Duchenne UK and Duchenne Care UK.

Join from 7-8pm on Thursday 4 June for the latest updates and to find out what's happening next.

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