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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How I found my voice as a disabled journalist
Emmagayle lives with facioscapulohumeral muscular dystrophy (FSHD). She shares her journey into becoming a journalist, running the Disability Journalism Forum, and what she’s learnt over the years about following your passion.
Myotonic dystrophy has affected three generations of my family, but we haven’t let that stop us
For Myotonic Dystrophy Awareness Day, Katy shares how her condition has progressed over the last 30 years, what life looks like as a mum with a disability, and how our Peer Support has helped her find purpose.
More than my diagnosis: my journey of resilience, independence and possibility
Leeza explains her journey living with congenital muscular dystrophy type 1A, including her experience of education and travel.
“Life is hard enough without having to fight for care, benefits and housing adaptations!”
Elaine explains the challenges she's been through, the fight with the local authority and the long and frustrating wait to get a care package.
Sisters cycle London to Brighton in memory of their dad
Three sisters take part in the London to Brighton Cycle Ride 2026 in memory of their dad, Philip. The trio are raising money in his name during Muscular Dystrophy Awareness Month. Hannah tells us about her dad and why she and her sisters Katherine and Lucy want to make him proud.
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.