We connect a community of over 110,000 people living with muscle wasting and weakening conditions. Together we are stronger. Join us. Our #MusclesMatter.
UK
Joined November 2008
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For a long time, we’ve remained on X to make sure we’re here for our community who use it.
However, X has become an increasingly concerning space and no longer reflects our values as an organisation or the safe, supportive environment we want to provide.
We were saddened to learn that Charles Scott, a longstanding supporter and member of our Board of Trustees, died on Wednesday 7 January 2026.
Charles made a significant contribution to the charity over many years, providing great support and insight during his time on the board.
If you’re living with myasthenia gravis, you’re not alone.
Join our informal myasthenia gravis support group on Wednesday 28 January 2026 on Zoom.
The group is open to anyone living with myasthenia gravis, their family and friends.
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You’ll get:
🫂A welcoming space to share and connect, led by our experienced volunteer chair.
🗣️A chance to meet, chat and ask questions with others living with MG.
📆 A space to reflect and look ahead to the rest of 2026.
Find out more and sign up here: loom.ly/m1m59M4
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Folkert attended our London Information Day in December.
He shares what they have to offer you, from expert speakers to a chance to connect with others with muscular dystrophy.
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Sign up to our upcoming Information Days 👇
📍York – Saturday 28 February: loom.ly/eJNeQ3Y
📍 Birmingham – Saturday 14 March: loom.ly/58vZho4
📍 Scotland – Saturday 28 March: loom.ly/ZyeOEco
"Looking back now, the signs were there from a young age. We just didn’t recognise them for what they were."
When Rich's son Max was diagnosed with Duchenne muscular dystrophy aged 8, it changed their lives forever.
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🫂Are you the sibling of someone with a muscle wasting condition?
Join our virtual therapeutic support group for siblings - sounds fancy, but simply it's a safe, confidential online space to share how you're feeling and connect with others.
Led by professional counsellors, you’ll have a welcoming and friendly space to talk about your experiences and get support.
🔗Register now: loom.ly/doZUyUs
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Do you live with a condition or have a family member who does? Are you interested in new research and willing to share your perspective?
We’re looking for members to join our Lay Research Panel! Could it be you? No scientific background needed🔬
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Here’s what it’s like to be part of the panel:
"Being a Lay Research Panel member is a really valuable opportunity to both give back and grow.” – Alison Kay, Panel Chair
🗓️ The deadline to apply is Monday 9 February.
Find out more and sign up here: loom.ly/8hOMecI
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“For me it wasn’t just about running and clocking up the miles, I really wanted to try and make a difference.”
Becky Naylor has run all six-star world major marathons, travelling across the globe - but her journey began with a member of her local community.
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There’s been a lot of talk about this in recent days and with various figures circulating online and in the media, it can be hard to know what to believe.
The cost of adding SMA to the existing newborn screening test would be £4-£5 per baby.
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If you have questions, know you can come to us. The information we share is based on reliable and up-to-date evidence with input from medical experts. And if we don’t know the answer to a question, we’ll do our best to find out.
You can read more here: loom.ly/H_gDMhE
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Bone health may often be overlooked in adults living with Duchenne muscular dystrophy – but it’s essential.
We've worked with Action Duchenne, Pathfinders Neuromuscular Alliance and the Duchenne community to create a toolkit of three videos explaining key guidelines.
Muscle weakness and long-term steroid use can make bones fragile, increasing the risk of fractures and osteoporosis. Knowing what good care looks like helps you advocate for yourself or your child.
📖 Read our news piece and access the videos here: musculardystrophyuk.org/news…
“I wanted to write something that showed disability doesn’t ruin your life or put it on hold.”
Erika, 23, lives with congenital muscular dystrophy.
She runs a small art business, and now she’s written an autobiography sharing her experiences growing up with the condition.
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“More than anything, I hope my book reassures people not to panic when their child is diagnosed, and helps them understand that although life may look different, it can still be full, meaningful and hopeful.”
Read more about Erika’s story: loom.ly/2-x3vNs
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📰 Join us at one of our information days in 2026.
🗣️ Expert speakers
⭐ Practical resources
👥 Connect with others
Find your nearest information day 👇
York ▶️ loom.ly/eJNeQ3Y
Birmingham ▶️ loom.ly/58vZho4
Scotland ▶️ loom.ly/ZyeOEco
Jesy Nelson has just given a very powerful and emotional interview on @ITV's @thismorning sharing what life is now like with her eight-month-old daughters who have been diagnosed with SMA.
Want to learn about the latest research and help shape what comes next?
Researchers from the MRC Toxicology Unit at the University of Cambridge are looking for people living with muscle wasting conditions, or their parents or carers, to share their experiences.
“30 years ago, we didn’t have non-invasive ventilation – now look at the standards of care for neuromuscular patients.”
Professor Rosaline Quinlivan has dedicated her career to supporting neuromuscular patients and improving standards of care.
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Many of you will have seen Jesy Nelson’s video about her twin girls being diagnosed with SMA type 1. She speaks passionately about making the video to raise awareness of the signs of the condition and the importance of newborn screening. 1/8
Little Mix’s Jesy Nelson posted a moving video yesterday sharing the news that her twin girls have been diagnosed with SMA type 1. She talks about the journey to diagnosis, how it’s changed the future, and wanting to raise awareness of the importance of newborn screening.
📞 Great news! Our helpline is now open for longer
We’re here to support everyone living with a muscle wasting condition, and we’re making it easier to get in touch with us.
If you need support, call us on 0800 652 6352 or email info@musculardystrophyuk.org. We’re here for you.
🗣️ We want to hear from you in 2026!
As part of our ten-year strategy, we want to reach out and be there for everyone living with a muscle wasting condition. So no one faces the journey alone.
Your story matters, share it here: loom.ly/JS3XBGo
