“Watching the person you love… lose their ability to move and speak while their mind stays strong is heartbreaking”
Les Shaw with his wife Julie Shaw, who was diagnosed with MND in May 2023(Image: Leeds Hospitals Charity)
A Hull fishmonger who tragically lost his wife to motor neurone disease (MND) has described how harrowing it is to watch a loved one “slowly lose their ability to move and speak while their mind stays strong”.
Les Shaw, 69, who owns local business Les’s Fresh Fish, plans to cycle 500 kilometres in memory of his late wife, Julie Shaw, who died in 2024, just one year after diagnosis. Sadly, there is still no cure for MND.
Last year, Les cycled 200 miles across three days from Morecambe to Hull, raising more than £20,000 for the Rob Burrow Centre for MND. He far exceeded his original target and inspired widespread support from the local community and beyond.
Now, Les is getting back on his bike, determined to do even more to help people living with MND and their loved ones in Yorkshire. He will be joined on the ride by four friends – Tony, Colin, Darren and Brad – with them all raising money for Leeds Hospitals Charity to support the Rob Burrow Centre for Motor Neurone Disease.
The challenge, named ‘Every Mile Matters’, comes a year after Les’s first fundraising bike ride in memory of Julie. Her diagnosis with MND came just one day after the couple watched the moment English rugby union coach Kevin Sinfield carried Rob Burrow across the finish line of the Rob Burrow Leeds Marathon in May 2023.
Former Leeds Rhinos rugby player Rob died the following year, having lived with MND for four-and-a-half years. Julie’s disease progressed very rapidly, leaving her paralysed before taking her life.
Les said: “MND is a cruel and devastating disease. Watching the person you love and who has been by your side for 40 years slowly lose their ability to move and speak while their mind stays strong is heartbreaking.
“I promised Julie I’d keep fighting, not just for her, but for everyone living with this illness.”
The 2026 challenge is physically tougher than last year, with Les and his fellow riders covering an average of 100km a day. They aim to finish at The Ravenser Pub in Hull at 1pm on Saturday, May 30, where supporters are invited to gather and welcome the cyclists home.
Despite the scale of the challenge, Les is driven by a motivation to help others and remember his wife. “Cycling 500km is tough, but it’s nothing compared to what families living with MND go through every single day,” he said.
“Every mile we ride represents our determination to raise as much money as possible for the Rob Burrow Centre to help improve care, fund life-changing research and give hope to families.”
Les has already raised over £10,000 for this year’s challenge, with donations coming from friends, family, customers, and people who have been moved by his story.
You can donate and follow Les’s journey here.
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