Muscular Dystrophy UK

Muscular Dystrophy UK We’re here for everyone living with and affected by muscle wasting and weakening conditions. Read more about our latest posts: https://linktr.ee/MDUK

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 110,000 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.

A huge thank you to everyone who took part in the very first Pedal Paddle Peak Jurassic Coast and made this brand-new lo...
28/09/2026

A huge thank you to everyone who took part in the very first Pedal Paddle Peak Jurassic Coast and made this brand-new location such a success.

From a challenging cycle route that tested even the toughest participants to a last-minute route change thanks to an unexpected bull 🐂, this was an adventure to remember.

Along the stunning backdrop of the Jurassic Coast, 100 participants tackled the challenge with determination.

And together they’ve already raised an incredible £60,000 and counting to help change the future for people living with muscle wasting conditions.

An unbelievable effort from everyone involved. We couldn’t be prouder 🧡

Feeling inspired? Register your interest for next year’s event https://www.musculardystrophyuk.org/ppp/jurassic-coast/ ⛰️✨

"When your family members are diagnosed with a muscle wasting condition, it doesn’t just affect the individual but the w...
28/09/2026

"When your family members are diagnosed with a muscle wasting condition, it doesn’t just affect the individual but the whole family."

Coady's sisters Frankie and Cerys both live with myotonic dystrophy.

They inherited the condition from their mum, who is a carrier but doesn't experience symptoms - but Frankie and Cerys have very different experiences of living with a muscle wasting condition.

"The condition presents more severely in Frankie, whilst Cerys currently has minimal symptoms.

"It's things that others may not notice so much, but when you’re living with it day in day out, it can become a big thing.

"Over the years, it’s been a slow deterioration. Things that someone takes for granted daily become more difficult for them.

"We don’t know what the future holds. But we’ve got each other."

Cerys, Coady and Frankie will open this year's Bidwells Cambridge 10k, where thousands of runners will take to the streets of Cambridge to raise funds for us.

"What an honour to officially start this year’s event together with my sisters and then join the runners to complete the course, for a cause that’s so important.

"It's more personal for us because we know the impact of living with a muscle wasting condition every day.

"To see the whole of Cambridge coming together to support Muscular Dystrophy UK is special."

Read more: https://loom.ly/tp6lNkQ

Last night we celebrated our 42nd Microscope Ball - and it was our biggest year yet, raising a record-breaking £590,624 ...
25/09/2026

Last night we celebrated our 42nd Microscope Ball - and it was our biggest year yet, raising a record-breaking £590,624 and counting!

Thank you to everyone from the property sector who joined us at the London Hilton on Park Lane to help change the future of muscle wasting conditions.

Of course, thank you to our amazing pledge speaker Carmela MBE Stands Up To Muscular Dystrophy, Kiera Santy and her London Marathon team for coming back to share their incredible marathon experience, and fabulous host Miss Demeanour 🧡

We also want to thank our auctioneer Jonny Gould, our fantastic Microscope Ball committee and chairwoman Michelle Anthony, and our brilliant headline sponsor IKON.

Jon Richardson and friends is back! 🌟We're delighted to announce that stand-up comedian and TV personality Jon Richardso...
25/09/2026

Jon Richardson and friends is back! 🌟

We're delighted to announce that stand-up comedian and TV personality Jon Richardson is hosting another night of comedy, helping to raise vital funds to change the future of muscle wasting conditions 🧡

He'll be joined by a fantastic lineup of comedians for one night only on Friday 12 March 2027 at the Waterside theatre in Aylesbury.

Tickets start at £32 and are on sale now!

Get yours: https://loom.ly/F5NrTb0

A regular donation can make a world of difference 🧡Just £5 a month could help us support people living with a muscle was...
24/09/2026

A regular donation can make a world of difference 🧡

Just £5 a month could help us support people living with a muscle wasting condition, like Amelie and her family.

And Muscular Dystrophy Awareness Month is the perfect time to start a regular gift to us. A monthly donation could help fund groundbreaking research and life changing support to change the future of muscle wasting conditions.

Amelie's mum shared the impact your donation will help fund:

“I’m incredibly grateful for the support we’ve received over the years.

"From introducing us to other families after Amelie’s diagnosis to helping fund equipment that has transformed her independence, Muscular Dystrophy UK has been there throughout our journey and will continue to be, I’m sure.”

Together we can change the future of muscle wasting conditions.

Donate today: https://loom.ly/ywBD6-0

“I just really want to show Phoebe how much I care about her and that anyone can raise money when they really want to he...
24/09/2026

“I just really want to show Phoebe how much I care about her and that anyone can raise money when they really want to help.” 🧡

Inspired by his friend Phoebe who lives with fascioscapulohumeral muscular dystrophy (FSHD), eight-year-old Lenny has done something remarkable: cycling 16 miles to raise £2546.

Lenny's mum Stephanie shared his story:

"When Phoebe was five, she was diagnosed with Facioscapulohumeral muscular dystrophy (FSHD), and over the years Lenny has seen the changes she’s gone through.

"As they’ve known each other since they were very small, he can see how her FSHD affects her."

A keen cyclist, a sponsored cycle was the obvious choice for Lenny,

"Lenny has never raised money for charity before, but he was determined to do something for Muscular Dystrophy UK in Phoebe’s name to help make a difference – to help Phoebe and others living with a muscle wasting condition."

And despite some windy conditions on the day, Lenny battled through to complete the 16-mile circular route.

What's more - he smashed his fundraising target, having only set out to raise £150.

"We’re so proud of him and seeing him with Phoebe at the finishing point, you could see on his face just how proud he was to have done it for her."

Read more: https://loom.ly/c4Lx23Q

Calling all families with a child living with a muscle wasting condition 📢Join us in November for our paediatric informa...
23/09/2026

Calling all families with a child living with a muscle wasting condition 📢

Join us in November for our paediatric information days in Wales, Northern Ireland and Scotland - free, in-person events for parents and carers of children living with a muscle wasting condition.

Whether your child has recently been diagnosed, you need practical advice, or you’d like to connect with others with similar experiences, everyone’s welcome.

You’ll get the chance to:
• Meet the team and feel part of our community 🧡
• Hear about the latest developments in research and support 🔬
• Learn about services and resources available to families 👪

Wales: 10am-3pm, Saturday 7 November.
Vision 21Sbectrwm, Bwlch Road, Fairwater, Cardiff, CF5 3EF

Northern Ireland: 10am-3pm, Saturday 21 November.
Girdwood Community Hub, 10 Girdwood Avenue, Belfast, Antrim, BT14 6EG

Scotland: 10am-3pm, Saturday 28 November.
Forth Valley College, Grangemouth Road, Falkirk, FK2 9AD

Find out more: https://loom.ly/HG_0W1w

It's OPMD awareness day 🧡Oculopharyngeal muscular dystrophy (OPMD) affects around 1 in 100,000 people. We've brought to...
23/09/2026

It's OPMD awareness day 🧡

Oculopharyngeal muscular dystrophy (OPMD) affects around 1 in 100,000 people. We've brought together five key facts about OPMD to help raise awareness around the condition, from causes to condition management.

1. OPMD mainly affects the eyes and throat.

The first symptoms of OPMD are drooping eyelids (ptosis), or difficulty swallowing (dysphagia) in adulthood. Symptoms usually don't appear until the age of 40, with the average onset age being around 50.

2. It’s caused by an abnormal protein

OPMD is caused by changes in the PABPN1 gene, which causes the body to make too much of a specific protein.

This protein builds up in muscles, especially the eyes and throat, causing muscle weakness.

3. It is a dominant genetic condition

Only one changed copy of the PABPN1 gene is needed to cause the condition even if the other is working fine.

This means a child of someone with OPMD has a
1 in 2 chance of inheriting the condition.

4. It can progress to limb weakness

After many years of initial symptoms, muscle weakness can spread to the limbs - being mild at first, but it can get more severe.

This usually starts around the shoulders, and later at the hips.

5. There isn't a cure, but it can be managed

Some lifestyle changes and surgery can manage and improve the throat and eyelid-related symptoms of OPMD.

For limb weakness, it’s important to stay as active as possible, supported by mobility aids if necessary.

Find out more about OPMD here: https://loom.ly/vF-W8cg

Come for a weekend of adventure in the lake district 🏞️We're inviting families who live with a muscle wasting condition ...
22/09/2026

Come for a weekend of adventure in the lake district 🏞️

We're inviting families who live with a muscle wasting condition to join us for an exciting and accessible weekend at the Calvert Lakes Activity Centre from 23 to 25 October!

The weekend is designed for families, offering the chance to try a range of activities in an inclusive, safe and supportive environment.

The cost is just £25 per person, and all young people under the age of 25 can attend free of charge.

Accommodation, meals, and all activities are fully included, so you can relax, enjoy quality time together, and create lasting memories as a family.

EDIT: Places are now full - if you are still interested in attending, please email [email protected]

"For decades, the conversation around neuromuscular conditions was almost entirely focused on management and care. Treat...
22/09/2026

"For decades, the conversation around neuromuscular conditions was almost entirely focused on management and care. Treatment was a distant hope.

"Today, that narrative is shifting fundamentally. Science is moving faster than ever."

For , one of our trustees, Chloe, has reflected on the progress we've seen in the past 10 years 🧡

New treatments for spinal muscular atrophy, Duchenne muscular dystrophy and myasthenia gravis are now available on the NHS - and those advancements could transform the future for other conditions too.

"Living with or caring for someone with a form of muscular dystrophy that does not yet have an approved treatment is incredibly tough. It can be bittersweet to watch breakthroughs happen in one area while waiting for your own.

"A win for SMA, Duchenne, or any single condition brings us closer to answers for all muscle wasting conditions.

"We still have a long way to go. We need to expand newborn screening across every nation in the UK, shorten diagnostic odysseys, and ensure equitable access to innovative drugs for every single individual living with a muscle wasting condition."

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

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