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
Filter by type
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.
“I can brush my own teeth again thanks to mobile arm supports”
Since raising money for mobile arm supports, 18-year-old Tomasz can now once again lift his arms up to do things like feed himself, pick up his phone and give someone a hug.
“Life has changed, but life is still good” – living with myasthenia gravis
After being diagnosed with myasthenia gravis in 2018 and later cerebellar ataxia, Gerry has had to adapt to life with two neurological conditions.
“How my diagnosis allowed me to rediscover rugby – in a wheelchair!”
Justin didn’t know where to turn when he was diagnosed with IBM, until he found wheelchair rugby. He shares his journey.
“I like helping people, I want to give something back”
Over the last 14 years, Kathryn Fullerton has been a passionate fundraiser, bringing the Shetland community together to raise money for different causes. This year she’s on a mission to raise funds for us and explains why.
I had to wait 10 years to be diagnosed with FSHD. I don’t want that for others
Zoe was diagnosed with FSHD in 2024 after having unexplained symptoms for almost 10 years. She shares her long diagnosis story.
Celebrating the volunteers who make our community stronger
This Volunteers’ Week, we’re celebrating the incredible people who give their time, energy and lived experience to support the muscle wasting community. Across our charity, volunteers help people feel less alone. They offer support after diagnosis, create welcoming spaces to connect, raise vital funds, influence research and help shape the future of our work.
A Mother’s march covering 249,000 steps in May
Mother-of-two Louise Desouza set herself a challenge of covering 249,000 steps across the month of May, inspired by her four-year-old-daughter Deedee, who was diagnosed with nemaline myopathy earlier this year.
Since my FSHD diagnosis, I’m focused on staying active in a way that works for me
Henry was diagnosed with FSHD 11 years ago, aged 18. He shares how the condition impacts his day-to-day life and why, together with his family, he decided to start a Backyard Ultra Marathon events company.