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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Are people with complex needs getting the support they need during hospital admissions?
For most people, going into hospital means putting yourself in the hands of doctors and nurses and trusting that you will get the care you need. But what if some of the care you rely on every day isn’t something hospital staff can simply pick up?
The science is catching up: Reflections on progress for Muscular Dystrophy Awareness Month
For Muscular Dystrophy Awareness Month 2026, one of our trustees, Chloe Docker, reflects on scientific progress, the power of early intervention, and why progress is possible when we keep pushing forward together.
Speaking hope into the hardship: my journey with DMD, mental health, and the quiet strength of prayer
Tomasz explains his journey with Duchenne muscular dystrophy, including the power of a positive mindset and the benefits of saying things out loud.
Running the Great North Run for Son: “Other than living with Duchenne, he’s a normal happy little boy. He’s just trying to live his best life.”
Dan Tailby, shines a light on his son’s journey of living with Duchenne muscular dystrophy after being diagnosed this year. Dan talks openly about his family’s experience on World Duchenne Awareness Day as he prepares to run the Great North Run.
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.