On Sunday 6 April 2025, Alex Hughes took part in the London Landmarks Half Marathon. Inspired by her mum, who lives with a rare muscle wasting condition, Alex was joined by her sister Charlotte, twin brothers Tom and Matthew, and family friend Tom Harrison. She explains what motivates her and her family to run and fundraise for us.
“We want to give something back”: siblings run Half Marathon in support of mum
Following Mum’s diagnosis in 2021, my sister Charlotte and I have completed numerous races and events to raise money for MDUK, a charity that is close to our hearts.
I did the London Marathon in 2022 as part of my ‘12 races in 12 months’ challenge and this year’s London Landmarks was my 16th half marathon. For the last two years, I’ve run with Charlotte and our amazing friend Tom. He’s our neighbour and we’ve known him for years so he’s more like an uncle to us really. This year, my twin brothers were old enough to join us as they turned 17 and it was great to have them there on the day as they took on their first ever half marathon.
Mum is an inspirational, kind, sociable person. She started experiencing problems in 2008 such as back pain and unexplained falls but, despite numerous visits to doctors, no one knew what was wrong. In 2020, she was admitted to hospital after a suspected heart attack, and it was at this point they pushed for further tests.
“Specialists originally thought it was limb girdle muscular dystrophy but later diagnosed a rarer condition, VCP disease which affects her muscles and bone density.”
She was always so independent but she’s now in a wheelchair full time, which has been extremely hard for her to accept, but she always looks at the positives and just gets on with things. It can be hard when we can’t do everything we want to do together as a family, but she doesn’t let it stop her or define her as a person.
“We just want to give something back to the charity that supports people like Mum so that everyone living with a muscle wasting condition can get the help they need.”
Mum’s condition is extremely rare – affecting just 42 people in the whole of the UK and, despite no known history in the family, it’s genetic so unfortunately there’s a 50:50 chance that we will have inherited it. Currently there’s no cure for it, or any muscle wasting condition, which is why it’s so important to fundraise.
By supporting MDUK, we can help the charity to fund research which improves understanding of conditions and hopefully leads to new treatments and one day a cure. It also means they can be there to provide advice and support so that people, like Mum, can live their lives to the full.
For me and my family, taking on challenges like this is about more than just fundraising as I think it’s so important to raise awareness about muscle wasting conditions.
When I talk about my mum, most people have little or no understanding of what it means to live with a muscle wasting condition. Some people I speak to have heard of Duchenne muscular dystrophy, for example, but as that mainly affects boys and typically starts in early childhood, they don’t see the link with my mum. That comes with its own challenges. Some of the children I teach thought that as my mum is in a wheelchair that she doesn’t live with us and I don’t ever see her!
“By starting conversations and spreading the word about muscle wasting conditions and the work of Muscular Dystrophy UK, hopefully more people will want to show their support and drive forward change.”
As a team, we all completed the London Landmarks Half Marathon with times between 1 hour 45 and 2 hours 18. We agreed in advance that we wouldn’t all try to stay together during the race. Charlotte and Matthew are very competitive, so I wasn’t going to get in the way of that!
The day brought new half marathon PBs for me and Charlotte, and Tom and Matthew got to experience their first half marathon. After the excitement of this year, we will certainly be back in 2026!
Support the team’s fundraising
By supporting Alex and her family’s efforts, you’ll be contributing to crucial research and support services for individuals living with muscle wasting conditions.
Inspired by Alex's story?
Find out how you can get involved and change the future of muscle wasting conditions.
