Stories

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.

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.

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.

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.

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.

For British Science Week, two top researchers share their thoughts on how research has advanced in recent years, how these advances are leading the way for future treatments, and the main challenges we’re yet to overcome.

In 2018, Lew Mathias was diagnosed with Myotonic Dystrophy Type 1, a rare muscle wasting condition. Six years later he has signed up to run the London Marathon. Lew explains his motivation and why he is so determined to prove to himself, as well as to his friends and family, that he can overcome challenges and achieve extraordinary things despite his condition.

Lorna’s son, Ed, is a powerchair football fanatic and has been competing in competitions since he was 11. Now 30, he has a wealth of trophies to show for his talent. Lorna reflects on his ambition and how having a passion has given him a purpose.

This month we are putting a spotlight on Tink, who lives with a muscle wasting condition.

For ‘National Love your Pet Day’, we’re putting a spotlight on how assistance dogs can be amazing companions and support for people living with muscle wasting and weakening conditions. Ann’s life was s filled with love, fluffy cuddles and unwavering support when her assistance dog, Snoopy, came into her life. She shares why she decided to train her puppy as an assistance dog, the process, and how Snoopy is able to help her.

As it’s Valentine’s Day we asked you, our community, what you find the most challenging about dating with a disability.

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.