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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CEO Appeal 2025
With a deep commitment to supporting families affected by muscle wasting conditions, our CEO, Andy Fletcher is determined to drive change – from improving access to essential support and services to championing groundbreaking research. As the cost-of-living crisis adds to the challenges many face, he is calling for bolder action to ensure their voices are heard.

“Having a disability can be isolating – I’m grateful I’ve found the South Asian Neuromuscular Community group.”
Priyaneet has been involved in charity work since she was 10 years old. Now a Diversity, Equality and Inclusion Manager, as well as a Disability and Leadership Coach, Priyaneet uses her knowledge as a disabled woman from the Sikh community to advocate for others.

“I’ve been a single mum for 40 years and have three children, two with Duchenne” – here’s what I wish I’d known.
Yvonne has raised three children, two with Duchenne muscular dystrophy. She cares for her youngest son, 42-year-old Shane, most of the time now. Despite challenges they’ve faced over the years, including the bereavement of Yvonne’s eldest son, Casey, the family has wonderful memories together. Yvonne shares how she has coped as a single mum, the good times her family has had, and the advice she would give to other parents who have children with a muscle wasting condition.

“Receiving peer support has changed my perspective about my condition – I learnt I didn’t need to feel alone”
When Lisa was first diagnosed with oculopharyngeal muscular dystrophy (OPMD), with no family history of the condition, she felt isolated and unsure where to turn. Since receiving support from Graham, this has changed.

“We can feel January blues for the whole of winter!”
At this time of year, when you may feel a little more isolated, it can be comforting know you’re not alone. We asked you, our community, what you find hardest about the winter months, and what you do to have fun while you’re waiting for the sun to return.

Being a Muscle Group chair has allowed me to form new friendships
Tony became the East Midlands Muscle Group Chair in 2023. He shares his story about why he wanted to be a volunteer, what’s involved, and what he’s gained from the experience.

‘Ramaganza’ online gaming marathon in memory of friend’s daughter
Steve Wallace took his love of online gaming to a new level when he recently organised his third 12-hour livestream for charity, raising over £3,000 in memory of his friend’s daughter, who lived with myotonic dystrophy and died a few years ago. Steve explains how the idea for the fundraiser came about and why he wanted to support us.

“Vamorolone helped my son maintain his independence”
Mandy’s 12-year-old son, TJ, who has Duchenne muscular dystrophy, received Vamorolone for six years via a clinical trial. She believes he gained huge benefits on the drug. In celebration of Vamorolone being recommended by NICE (National Institute for Health and Care Excellence) on 10 December, Mandy tells their story. She shares their personal experience of how they feel Vamorolone helped TJ, and what happened when he came off the treatment and switched to standard use corticosteroids.

“I carry his memory with me every day”: a tribute trek for my brother
Scott Wright’s brother, Neil, lived with Duchenne muscular dystrophy and sadly died in 2007, aged 22. This year would have been Neil’s 40th birthday and to mark the occasion, Scott and two friends decided to climb Mount Kilimanjaro in October in his memory. Scott explains the motivation behind the challenge.

“I fundraise for Muscular Dystrophy UK to help find a treatment for my stepdaughter.”
Ann Tunnicliffe shares her experiences of being part of our northwest fundraising group. She talks about the types of events they organize, her personal connection to the charity, and why fundraising is important to her.

“My care has been cut by nearly half – I can hardly leave the house now”
Kim has the condition titin related myopathy and lives in Glasgow. She shares her struggles of having her care hours cut by almost half, the challenges of fighting for basic human needs, and how the support team at Muscular Dystrophy UK have helped her to deal with this.

“My biggest struggle is how isolated that I feel”
Although I am 58 and was diagnosed with Facioscapulohumeral muscular dystrophy (FSHD) 22 years ago, it does not surprise me that the health board in Dumfries and Galloway, where I live, has no record of me. But with data capture now so easy to collate, this should not be the case.