Stories

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.

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.

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.

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.

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.

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.

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.

For this year’s Disability History Month, the theme is Livelihood and Employment. As Muscular Dystrophy UK’s Employability Officer, I thought I would look over the last few decades at how things have changed. As someone who is disabled and lives with a muscle wasting condition, I’ve often found myself feeling frustrated, both personally and professionally, when it comes to employment. However, it is important to remember the progress we have achieved, and hope this improvement continues.

The cost-of-living crisis continues to disproportionately affect people living with muscle wasting and weakening conditions. On Thursday 14 November 2024 we published our cost-of-living report. As part of this report we conducted first-person interviews. This is Daniel’s Story.

Charlotte and her husband, Tom, live together and both have muscle wasting conditions. As well as experiencing increased financial costs due to their disabilities, they also have to cope with receiving less benefits because they are married and live together.

Eight-year-old Jaxon was diagnosed with Ullrich congenital muscular dystrophy in April 2023. His mum, Laura, shares their diagnosis journey, how the condition affects Jaxon, and the community the family have found in Muscular Dystrophy UK.

On 21 September, Nathan Franklin and his friend Tom Grassby ran 53 miles – the equivalent of two marathons – from Leeds to Hull. Inspired by Nathan’s younger brother Jack who lives with Duchenne muscular dystrophy, they raised over £7,000 and completed the run in 12 hours 5 minutes. Nathan tells us about the challenge.