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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“Being diagnosed with Becker just before starting high school really affected my mental health”
James shares what his teenage years have been like living with Becker muscular dystrophy. He looks back at physical struggles, getting diagnosed, the mental health challenges he’s faced and small, but necessary things that need to change in society.
“If SMA had been included in newborn screening, Ezra’s life could look so different”
Catherine’s son, Ezra, has spinal muscular atrophy (SMA) type 2. She shares the pain of watching him lose strength, the hope treatment has given their family, and why she believes every baby should be screened for SMA at birth.
My journey with muscular dystrophy: a story of togetherness
Shameem shares her story of living with limb girdle muscular dystrophy (LGMD), including her education and moving to the UK.
My brother, my best friend: learning to live with grief
Scott lost his brother, and best friend, Craig, to Duchenne muscular dystrophy when they were young adults. Now, Scott is drawing on his own experiences of grief and loss to create 'Where the Shadow Ends’, a short film inspired by his relationship with Craig.
“He just wants to make a difference for his friend”: Lenny’s cycle for Phenomenal Phoebe
Inspired by his friend Phoebe, who lives with Facioscapulohumeral muscular dystrophy (FSHD), eight-year-old Lenny decided to take on a cycling challenge to raise money for us. On 12 September, he cycled 16 miles and raised over £2,500. His mum Stephanie tells us why he wanted to do something to make a difference.
Sisters to open Bidwells Cambridge 10k 2026: “We don’t know what the future holds. But we’ve got each other.”
Three sisters will open our annual Bidwells Cambridge 10k before two of them join thousands of runners to complete the course. They talk openly about living with muscular dystrophy and the importance of starting this year’s race together.
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?