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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Identifying a potential gene therapy by growing ‘mini muscles’ in a dish
Dr Daniel Moore, who recently completed his PhD funded by us explains how his research has identified a potential gene therapy for laminopathies.
“I’ve written the book I wish I’d been able to read growing up.”
Jack's brother Sam passed away from Duchenne muscular dystrophy so he started writing a memoir of his life and their tight bond because he wanted others "to know they're not alone".
“The conditions are rare, and people’s understanding is limited”: running to raise funds and awareness
Inspired by his son and a friend, who both live with a muscle wasting condition, Trevor Morgan is running the 2025 London Landmarks Half Marathon to raise money and increase awareness. He tells us what made him sign up to take part in the event.
“By leaving a gift in your Will, you need to understand how impactful you are. Not only for one neuromuscular condition, but for a large group of conditions.”
Professor Laurent Servais of the MDUK Oxford Neuromuscular Centre tells us how these special types of gifts have the power to change the story for future generations.
“Whilst there is no cure, the managing of the conditions has improved a lot. For example, Joe’s been taking preventative heart medication thanks to previous clinical trials.”
Teenager Joe Driffield lives with Duchenne muscular dystrophy. Hear from his family how a gift in your Will can help families like his.
“Raising awareness of our son’s condition is emotionally exhausting, but we do it to help fund treatments”
Zoe’s son Archie was diagnosed with muscular dystrophy in June 2024 at six years old. As parents, Zoe and her partner, were continuously told their concerns were all in their heads. Then, following a long diagnosis battle, the results came back as muscular dystrophy, which they’d never heard of before. Zoe shares Archie’s diagnosis journey, the fundraising they have done since, and why raising awareness of their son’s condition is so important to them despite still trying to process what this means for their lives.
“We’re keeping Stuart’s memory alive with a gift in our Will”
Bob and Irene Glover lost their son, Stuart, to Duchenne muscular dystrophy when he was just 16 years old. Find out why they have chosen this special type of gift to honour Stuart’s memory.
“Of course I’m more restricted in what I can do, but I’m still the same person.”
Sheila Hawkins was diagnosed with FSHD when she was 31 and has been actively involved with our community for many years. Sheila tells us why it was important for her to pledge a gift in her Will to us.
Running the London Landmarks Half Marathon for my family
On Sunday 6 April, Kemlo Rose is taking part in the London Landmarks Half Marathon. He is running in support of his father and siblings who live with myotonic dystrophy type 1. Kemlo explains why he decided to take on this challenge and why fundraising is important to him.
“My alert card was invaluable when I was in hospital with pneumonia”
Lauren shares how her Muscular Dystrophy UK alert card helped her enormously when she was admitted to hospital. The medical professionals had little understanding of how Lauren’s spinal muscular atrophy affected the treatment she needed. Only when she gave them her alert card that explained the condition and protocol to follow with a respiratory infection, did she start receiving the care she needed. Now she’s encouraging others to get an alert card.
From cake sale to abseil: fundraising in support of my grandson
“Inspired by his courage”: Running the London Marathon in memory of my brother
On Sunday 27 April, Ben Pusey is taking part in the London Marathon. He’s running in memory of his brother Lewis who lived with Duchenne muscular dystrophy and sadly died at the age of 14. Ben explains why he wants to do this to mark the 20th anniversary of his brother’s passing.