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.

25/08/2026

Painting a clearer picture of muscle wasting conditions in the UK 🔬

Professor Heidi Fuller from Keele University explains her new research into the epidemiology of muscle wasting conditions - and how finding out who currently lives with muscle wasting conditions will help plan better care and support in the future.

Thousands of people live with muscle wasting conditions in the UK.

But we don't have a clear idea of just how many, and how the distribution of conditions varies by factors like age, gender, ethnicity and region.

Using one of the UK's largest healthcare datasets, this two-year study will create the most up-to-date picture of muscle wasting conditions across the country.

We're proud to have supported this research with a £158,000 grant. The data it produces will be vital in effectively planning research, services and access to treatments for people who need it most.

Read more: https://loom.ly/SCmpkY4

"Having a sibling with a condition completely changes your views... We don’t live in an accessible world. It’s not fair ...
21/08/2026

"Having a sibling with a condition completely changes your views... We don’t live in an accessible world. It’s not fair on disabled people."

Laura's brother Ben lives with Duchenne muscular dystrophy. She's watched his life change, and the impacts his diagnosis has had on her family.

"Receiving the news of Ben’s diagnosis was shocking. It soon became our family’s normal, as you adapt.

"The diagnosis doesn’t just affect the individual it affects the whole family. It changes the family dynamics of your entire house.

"Adaptations had to be made for Ben by moving his bedroom downstairs into the dining room to make him more comfortable."

As a carrier of Duchenne herself, Laura wanted to do something positive, both to raise awareness of muscle wasting conditions, and to fundraise for support and research to change things for future generations.

And she gave herself a real challenge - completing the Copenhagen Ironman which involved running a marathon, cycling 180km and completing a 3800m open water swim in 15 hours.

"When the going got tough, I thought of Ben. He was 100 percent my main motivation.

"I’m not the one with Duchenne muscular dystrophy, so I wanted a hard challenge to make people donate. Also, one day I may not be able to, so I’m pushing myself whilst I can."

Read more of Laura and Ben's story: https://loom.ly/nIsHpwM

50% off ultra challenges in 2027!If you've ever fancied challenging yourself whilst raising vital funds to change the fu...
20/08/2026

50% off ultra challenges in 2027!

If you've ever fancied challenging yourself whilst raising vital funds to change the future of muscle wasting conditions, now's your chance.

Whether it's a short walk, or a full 100km trek, there are options available across the UK to suit your level of challenge.

And we've got a 50% discount with Ultra Challenge for 2027 - but you need to move fast, as the offer ends on Monday 31 August.

Sign up now: https://loom.ly/U9nQ0-Q

We're standing with 40 other charities to oppose cuts to benefits for disabled young people.Support, security and oppor...
19/08/2026

We're standing with 40 other charities to oppose cuts to benefits for disabled young people.

Support, security and opportunity should be at the forefront of this conversation - not cuts to support for those most in need.

In March last year, the UK Government’s Pathways to Work Green Paper proposed removing the health element for all under 22-year-olds.

But cuts like this could plunge thousands of households into poverty at a time where many members of our community are already worried about financial security.

Our chief executive Andy Fletcher said: "We are deeply concerned about proposals to restrict access to the health element of Universal Credit for disabled people aged under 22.

"Young people living with muscle wasting conditions and their families are already telling us they feel increasingly worried about their financial security. For those receiving the health element, this loss of income could be devastating.

“While many young people with muscle wasting conditions are in education, employment or training, the complex and often fluctuating nature of these conditions can make this impossible.

"Some people may become unwell and need extended periods out of work or training. For others, paid employment will never be an option.

"For these people, the health element is a vital lifeline, helping to cover the significant additional day-to-day costs our community already face to cover things like tailored support and equipment.

“Government efforts should focus on giving better, dedicated support to the many young disabled people who can and want to work, rather than removing vital financial support from those who cannot."

Find out more: https://loom.ly/s3AOPhI

"A diagnosis doesn’t have to take away hope, ambition or the chance to achieve things that matter." 🧡Alex was diagnosed ...
19/08/2026

"A diagnosis doesn’t have to take away hope, ambition or the chance to achieve things that matter." 🧡

Alex was diagnosed with myotonic dystrophy in his first year at university. Initially, he struggled to take it in.

"I felt relieved to have an explanation for why I wasn’t getting stronger even though I frequently went to the gym and had weakness in my hands, but also scared that the future I had imagined might change.

"For a while I tried to hide my condition. Even struggling on trying to write all my exams by hand (which is the most affected part of my body).

"Eventually, though, I learnt that having myotonic dystrophy was nothing to be embarrassed by."

Despite his condition, and with the support of two of his friends, Alex has achieved something remarkable: climbing Snowdon, and raising over £3000 to help change the future of muscle wasting conditions.

"I knew Snowdon would be difficult, but I didn’t want fear to be the reason I said no.

"When we reached the summit, I felt exhausted, proud and emotional. Reaching the top with Matthew and Fin beside me is something I’ll always hold on to."

Read more: https://loom.ly/84hXRd8

18/08/2026

How many people in the UK are affected by muscle wasting conditions, and how could that number change in the future?

We're delighted to award Professor Heidi Fuller from Keele University a £158,000 grant to help answer these vital questions as part of our 2026 epidemiology funding.

Epidemiology is the study of who is affected by a condition, how common it is, and how it changes over time.

Using one of the UK's largest healthcare datasets, this two-year study will create the most up-to-date picture of muscle wasting conditions across the country

This research is vital to help ensure health services and researchers can support our community as best they can.

It'll also help to plan for the future in response to changing needs - like predicting demand for specialist services, clinical trials, and new treatments.

Read more: https://loom.ly/SCmpkY4

Get involved and help raise awareness about muscle wasting conditions!Muscular Dystrophy Awareness Month is only two wee...
18/08/2026

Get involved and help raise awareness about muscle wasting conditions!

Muscular Dystrophy Awareness Month is only two weeks away.

Across September, we'll spread the word about muscle wasting conditions, how they impact people and the incredible work being done to research and treat them.

But we need your help - here's how you can take part.

1. Post to raise awareness 📢
Share your experiences and spread the word about muscle wasting conditions - and be sure to use the hashtag

2. Fundraise for us 🌟
If you’ve been thinking about fundraising, September’s the perfect time. From running challenges to bake sales, you can fundraise your way.

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

3. Share your story 💬
Tell us about your journey - whether you live with a condition, or have a loved one who does.

Find out more here: https://loom.ly/JS3XBGo

4. Stay tuned on our socials 🧡
Throughout September, we’ll be highlighting stories from our community, sharing research updates and raising awareness about a range of conditions.

Keep an eye out across Facebook, Instagram, LinkedIn and YouTube.

MDUK 🤝 CeX We're delighted to share that we've partnered with CeX, so you can make a round up donation when you make a p...
17/08/2026

MDUK 🤝 CeX

We're delighted to share that we've partnered with CeX, so you can make a round up donation when you make a purchase in every CeX store in the UK!

Since starting last month, we have already seen 5,980 donations, with many customers choosing to donate around £1 at the checkout.

Every donation, no matter the size, helps us fund vital research, support services and advocacy for people living with muscle wasting and weakening conditions.

We're incredibly grateful to CeX for their support, and to every customer who has chosen to round up and help change the future of muscle wasting conditions 🧡

14/08/2026

Your voice matters, and we want to help make it count 🧡

We know that support systems in the UK aren't working for people living with a muscle wasting condition, and that needs to change.

That's why want to hear from people living with a muscle wasting condition, as well as families and carers.

We'll take your experiences directly to politicians, healthcare leaders and hospitals across the UK to make sure that your needs shape the future of the support you receive.

The survey takes 5 to 15 minutes to complete, and you can enter a prize draw to win one of five £50 vouchers.

Share your experiences: https://loom.ly/n0B7vqk

We're up for an award - and we need your support 📢We've been shortlisted for the Recruiter magazine awards Charity of th...
13/08/2026

We're up for an award - and we need your support 📢

We've been shortlisted for the Recruiter magazine awards Charity of the year for 2026, in recognition of our support for people with muscle wasting conditions to enter and stay in employment.

Through our peer networks and support for self-advocacy, we help people live and work as independently as possible, breaking down barriers that too often prevent disabled people from being part of the workforce.

Together, we can bring candidates, recruiters and communities together to make a more inclusive workforce a reality 🧡

Vote here: https://loom.ly/A-HDL9o

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