Inspired by his son and a friend, who both live with a muscle wasting condition, Trevor Morgan is running the 2025 London Landmarks Half Marathon to raise money and increase awareness. He tells us what made him sign up to take part in the event.
“The conditions are rare, and people’s understanding is limited”: running to raise funds and awareness
My main motivation for running and fundraising for MDUK is my eldest son, Owen. He’s 28 and lives with Bethlem myopathy, a rare condition which causes tightness in his tendons and muscle weakness.
Owen’s mum had Bethlem myopathy. When we went to have some checks in the late eighties, early nineties, before having children, we were told that the condition wouldn’t be passed on. However, when Owen was born, we noticed signs early on and he was diagnosed with the same condition when he was about six months old.
He doesn’t let it define him though. While he can’t run and finds it difficult to stretch and get up and down stairs as the condition affects his tendons, he remains active and tries to take each day as it comes.
“It’s in Owen’s nature to just get on with things and he’s about to move to Hong Kong for work so definitely hasn’t let his condition hold him back.”
This isn’t my first running challenge for the charity. Last April, I ran the London Marathon. I was part of the Team MDUK Facebook group and before the race, I arranged to start the marathon with one of the other runners, Lynsey, who lives with myotonic dystrophy type 1. We had never met before but ended up running the whole distance together!
Running the London Marathon alongside someone living with a muscle wasting condition was inspiring. Lynsey’s condition is very different to Owen’s but both myotonic dystrophy and Bethlem myopathy are rare and people’s understanding of the challenges they face is limited.
“We really spurred each other on and made sure we crossed the finish line together.”
That shared experience and understanding of living with a muscle wasting condition has led to a friendship for life.
I broke two toes during last year’s marathon and vowed to never take part in another race again. But here I am!
I didn’t want all the hard work and training to slip away so decided to hit London again and signed up for the London Landmarks Half Marathon a few days after running the London Marathon. It’s only natural that I’d want to do it for Muscular Dystrophy UK again to raise more money and awareness for a cause close to my heart.
Lynsey was planning to run the London Landmarks Half Marathon with me but has sadly had to withdraw due to illness. I’m doing this for Owen and for Lynsey.
Support Trevor’s fundraising
By supporting Trevor’s efforts, you’ll be contributing to crucial research and support services for individuals living with muscle wasting conditions.
Inspired by Trevor’s story?
Find out how you can get involved and change the future of muscle wasting conditions.
