'My MND gave me the chance to do something positive'

This time six years ago Nick Apperley was a keen runner and a fit and active cyclist who would clock up as many as 150 miles (241km) on his bike every week.

But in June 2023, the father-of-two, from Ufford, in Suffolk, was diagnosed with Motor Neurone Disease (MND), which has affected the use of his hands and his ability to walk unaided.

Despite his condition, the 64-year-old has remained ever-defiant and determined to defy the limitations the debilitating disease is starting to place on him.

Since being diagnosed, he has staged a number of fundraising challenges and events in aid of MND charities. Incredibly, his efforts have raised £100,000 – but now he wants more.

"If someone puts £100,000 in your bank account, you'd think, 'wow, that's fantastic', and it is a lot of money," he said.

"But, in reality, while it seems a lot of money, in medical research, £100,000 does not go very far and on its own it isn't going make a difference.

"So that's the reason why I'm keen to really go further. I'm pleased with what I've done, but I'd like to be even more pleased doing more. I hope in time we can get to £250,000."

Nick first started to suspect something was not right in 2020, when he found himself with "floppy feet", constantly tripping over during his morning jogs, and enduring painful cramps.

As his condition gradually started to worsen, his son Harry, who is a paediatrician, said he believed he had a motor neurone condition.

MND causes muscle weakness that gradually worsens over time. It kills almost 2,200 people in the UK each year.

"I don't dwell on what I can't do anymore, I just live life to the full - we're not just simply living with MND, we're embracing it and moving it forward," added Nick.

"Although it's not a journey anyone would choose to be on there is light at the end of the tunnel and the MND journey has given us opportunities to do something positive."

The positive became raising £100,000 for the MND Association, the My Name'5 Doddie Foundation, and Challenging MND, through physical challenges and events.

One of his fundraisers was a 444-mile (714km) cycle from Suffolk to Sennen in Cornwall and a fancy black-tie ball in London that was organised by his son.

He also took part in rugby player Kenny Logan's 555-mile (893km) ride around Ireland, meeting the likes of Ally McCoist and Gabby Logan.

"People have been incredibly supportive and embraced what we've done and I think for a lot of people it's been an eyeopener into what MND is," said Nick.

"These people can be part of making a difference because it may come closer to home in the future - you never know what's around the corner."

People who are living with the type of MND that Nick has are expected to survive for between two and three years after their diagnosis.

"How long I've got left, I don't know – MND is one of these things where you can be fine and then suddenly go downhill," said Nick, who now often uses a powered trike to get around.

"So, who knows how long I've got. It is a brutal disease.

"But I hope that through my fundraising I'm making a difference to people living with MND and also vital research that needs to happen to find treatments and a cure - so MND won't be the death sentence that it is now."

Jo Coker, Head of Income Generation, at the MND Association, said she continued to be “blown away” by Nick’s efforts.

“We’re delighted he has reached the incredible milestone of raising £100,000 to support MND charities, including the MND Association," she said.

“Despite living with MND and the challenges it brings, Nick remains a tireless fundraiser and campaigner.

“His contribution to raising awareness of MND, both in his local community and across the country, has been extraordinary.”

This was echoed by Paul Thompson, Director of Fundraising at My Name'5 Doddie Foundation.

"Nick has shown what can happen when someone channels their determination into helping others,” he said.

“Raising more than £100,000 for MND charities is a remarkable achievement, but just as importantly, he has helped shine a spotlight on motor neurone disease and brought countless people together behind the cause.

“Everyone at My Name'5 Doddie Foundation is incredibly grateful for his support and the difference he continues to make.”

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