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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An honours degree, written on an iPhone: the extraordinary life of Krishan McDonagh
Krishan McDonagh lived with Duchenne muscular dystrophy and sadly died in October 2026 at the age of 28. His older brother Renford shares a tribute, highlighting how Krishan’s determination and achievements inspire him every day. And why he believes people living with muscle wasting conditions deserve every opportunity and form of support.
“I’m grateful I can still walk at 17 despite having Duchenne”
AJ was diagnosed with Duchenne muscular dystrophy as a toddler in China. Now living in the UK, he shares how education, accessibility and newer treatment are shaping his ambitions for greater independence, as well as his unique position to still be able to walk at 17.
“Sometimes I’d fall asleep with my coat on because I couldn’t undo the buttons” – CMT awareness month
For Charcot-Marie-Tooth disease Awareness Month, Margaret shares how the condition has affected her family, mobility and daily life.
From mother to advocate: turning Dan’s Duchenne story into change
When Phillippa’s son, Dan, was born in 1992, Duchenne muscular dystrophy care looked very different. Dan died in 2019, aged 27, but he wanted her to continue sharing their story and pushing for change.
Travelling over 1,700 miles by bus: “I’ve always been quite honest with my abilities, and this trip was a huge personal mission.”
Ben Ridsdale went the extra mile as he travelled over 1,700 miles by bus from his home in Crewe to Berlin, Germany and back. The trip was in memory of his two childhood friends, Matt Leadbitter and Rory Bennet, who both lived with Duchenne muscular dystrophy.
“We came as a duo or not at all” – losing my twin brother with Duchenne
Kate shares her raw and emotional journey of losing her twin brother, David, who had Duchenne muscular dystrophy, at just 12 years old. She reflects on their special bond, as well the difficulty of her grief journey.
“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.