Read real life stories from people in the muscle wasting and weakening community. Browse our blogs about a range of topics we think will interest you.
STORIES FROM OUR COMMUNITY
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Completing my first Ironman challenge: “My brother was my main motivation. When the going got tough, I thought of Ben.”
Witnessing her brother Ben living with Duchenne muscular dystrophy gave Laura the inspiration to complete the Copenhagen Ironman.
“Living with myotonic dystrophy won’t stop me chasing adventure” – climbing Snowdon with a muscle wasting condition
Alex was diagnosed with myotonic dystrophy aged 19. Learn more about his Snowdon climb and future adventures.
Taking to the skies for my brother
On Saturday 8 August, friends Kelly Rees and Mark Coles fulfilled a lifelong ambition to do a skydive while raising thousands of pounds for a cause close to their hearts.
“He was my best friend and my biggest supporter”: Why I took on a challenge in memory of my big brother
Emily took on the challenge in memory of her older brother Joe, who lived with Duchenne muscular dystrophy and sadly died in 2021 aged 28. Emily tells us about her brother and the challenge.
“Months without a diagnosis stole so much from Dani. SMA newborn screening could have changed that.”
After Dani's SMA type 1 diagnosis, her dad Charlie explains why newborn screening matters for every baby in the UK
Community, representation and living with GNE myopathy as a South Asian woman
Learn about community, representation and living with GNE myopathy as a South Asian woman, this South Asian Heritage Month.
“We’ve always encouraged Amelie to focus on what she can do, despite having Ullrich.”
For Ullrich Awareness Day, Amelie's mum shares how the right diagnosis, specialist support and a determination to focus on what Amelie can do have shaped their journey.
“He’ll be my angel on my shoulder”: Taking on 100k challenge in loving memory
After his younger brother Tom sadly died 24 years ago, Sam channelled his grief into fundraising. He is taking on a 100k challenge in memory of his brother Tom.
Progressive conditions don’t get better. The PIP system should recognise that
Sara shares how PIP helps cover the additional costs of living with a progressive condition, and why the benefits system should better recognise the lifelong nature of progressive conditions.
Turning a negative into a positive: my 150-mile challenge with LGMD
After being diagnosed with LGMD at seven years old, Millie has spent her life adapting to the challenges of a progressive muscle wasting condition. This July, she's taking on a 150-mile walking challenge to fundraise and improve awareness of LGMD.
“Every step is in memory of those we’ve lost”: Why I’m taking on a series of ultra challenges
Krishan Vara is taking on a series of ultra challenges during 2026 following the loss of his uncle and two cousins, who all lived with Duchenne muscular dystrophy. He tells us why he’s doing this in their memory.
PIP helps me stay independent – but the system needs to change
Gerry shares how PIP helps him maintain his independence, the challenges he's faced navigating the benefits system, and why Muscular Dystrophy UK has been a lifeline.