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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My journey as a disabled entrepreneur – not the road most travelled, but one that’s mine
Umbreen, a disabled entrepreneur, shares her journey to winning the Stelios Award, overcoming challenges, and leading a care home business.
London to Paris – the hard way! Arch 2 Arc triathlon in support of friend’s son
Sam Weale attempts the grueling Enduroman Arch 2 Arc triathlon: 87-mile run from London to Dover, English Channel swim, and 181-mile cycle to Paris. Inspired by friend’s son Will with Duchenne muscular dystrophy, raising funds for vital research at Muscular Dystrophy UK.
‘I couldn’t even run 100 metres at school, now I’m running 5ks — here’s what I’ve learnt.”
From living with Becker muscular dystrophy and school humiliations to conquering a 5K run: Discover Andrew's inspiring journey of defying expectations, building confidence, and proving that every story of resilience matters.
Celebrating strength: Disability Pride Month in the muscle wasting community
Celebrate Disability Pride Month with the muscle wasting community, embracing strength, resilience, and diversity. Learn about our challenges, share our stories, and join us in breaking stigma and promoting inclusion.
He’s an inspiration and it’s an honour to run for him
Alistair Macpherson shares his inspiring journey from running the Glasgow 10k to preparing for his first half marathon at the Great Scottish Run to support Muscular Dystrophy UK. Motivated by his friend’s son Joss, diagnosed with Duchenne muscular dystrophy, Alistair is raising awareness and funds for those with muscle weakening conditions.
“Music was our thing, and I know he’d love this”
On Saturday 6 September, hundreds of people will come together at The Drill in Lincoln for ‘CroftFest’, a music festival to celebrate the life of Ben Croft – a music fan, lover of Japanese culture, and friend who made a lasting impact on everyone who knew him. Event organiser Scott Cooper explains why he wanted to create a music festival in his best friend’s memory.
Clair takes on ‘The 13’ swim challenge for friend living with GNE myopathy
At 6:50am on her 60th birthday, Saturday 12 July, Clair Harris entered Lake Windermere to start ‘The 13’ challenge – swimming 71km, the full length of all 13 publicly accessible lakes in the Lake District. If this wasn’t enough, she cycled the 185km between them as well, finishing in 84 hours. Clair tells us what motivated her to take on this incredible challenge, which has previously only been completed by three people.
‘Hiking for Hope’: climbing Snowdon in memory of my brother
On Saturday 21 June, Ibrahim Hussain, 22, from Birmingham set off to climb Snowdon (Yr Wyddfa), the highest mountain in Wales. Joined by his two older brothers and three friends, Ibrahim took on the challenge in memory of his older brother Abdul Raheem, who lived with Duchenne muscular dystrophy and sadly died in June 2023 at the age of 24. We spoke to Ibrahim to find out why he took on this challenge.
What I have lost and gained living with Duchenne muscular dystrophy
Humans have a basic need for food, water, air, and shelter to survive. I live with the muscle wasting disease called Duchenne muscular dystrophy. This disease eventually takes away the ability to eat, drink and breathe independently. I’m going to add walking to that list because it is essential to getting around.
Hydrotherapy has helped my condition so much – now I’m helping others access it
Andy was diagnosed with limb girdle muscular dystrophy type two when he was 21. Now at 38, he’s been doing weekly hydrotherapy for the past 14 years. He explains how beneficial he’s found hydrotherapy, why access for people with muscle wasting conditions needs to improve, and about the charity he’s set up to allow more people in our community to experience the benefits of hydrotherapy.
“We’re a close family and this is my way of showing support”
On 11 May, Veronica Largue took part in the Run Garioch Half Marathon to raise money for charity. But this was just the start of her fundraising journey as on the same day she held a charity music gig, before climbing Ben Nevis the following week and then completing the 18-mile Aberdeen Kiltwalk on 1 June. Behind the challenges was one goal – to raise money for a cause close to her heart. Veronica tells us what inspires her to fundraise for us
Super Nanna raises over £3k in support of granddaughter living with FSHD
For the last five years, Maureen Smith, 86, from Nottingham has organised biannual charity lunches in her local community to raise money for us. Inspired by her granddaughter Jade, who lives with FSHD, Maureen has hosted ten lunches and raised £3,200. We spoke to her granddaughter Jade to find out more about her Nanna’s fundraising.