How did you get started with raising awareness and fundraising?

John: ‘I’ve always been a do-er, not a don’t-er.’

‘After the diagnosis, raising money and awareness for MND wasn’t the initial thing that I wanted to do, to be honest. What I wanted to do was to live my life, to do everything, travel everywhere, while I had the time. But while doing that, it was important for me to raise awareness of this awful disease. I’m lucky enough to still have a voice, almost 10 years in. Nearly everyone else I know with MND who’s at this stage can’t talk. So I thought to myself, I’ve got to use my voice for good.’

‘Since then, Arlene and I have put all our time, energy and money into travelling the world, raising awareness, raising funds and visiting people with MND. Wherever we go on trips, whether they’re in the UK or abroad, we go and see someone with MND at their house.’

Arlene: ‘Social media has played such a big part in all of this. From the very first challenge we did – which was a 920-mile cycle from John o’Groats to Land’s End – we posted it on our social media accounts and people were getting in touch, sharing their stories and cheering us on.’

Can you tell us about some of the other challenges you’ve taken on since then?

John: ‘There have been loads!

‘We’ve done 24 hours of lunging in the gym. That was brutal, only three of us completed every set of lunges and one of them was me – with MND. We’ve done a challenge to lift a million kilos. We’ve walked 100 kilometres in 24 hours. This year, we cycled 650 miles across England between every rugby premiership ground. So many people have got involved with the challenges too.’

Arlene: ‘We’ve also done awareness-raising challenges which show what it’s like for people with MND who lose their voice and ability to swallow, like the lemon challenge, where you’ve got to eat a lemon and its peel in under a minute.’

John: ‘The onion challenge was even worse – I was crying like a baby while I was eating that!

‘Everywhere we go, we take the MND flag with us and our friends do the same. It’s been to the Arctic. It’s been to the Sahara. My eldest son is trekking the Himalayas soon and he’ll be taking the flag with him. I’ve said to all my boys – even when I’m not here, just keep going and raising that flag.’

What’s been the most memorable challenge you’ve done?

John: ‘Skydiving from 23,000 feet over Mount Everest was perhaps the most memorable experience of my life. We trekked up to the highest drop zone in the world, Shang Besai.’

‘They had to duct tape my arms to the harness, because I couldn’t use them. I was the first person in the world with MND to do that, and I feel extremely lucky.’

‘Either that, or the following year, when I trekked to the base camp of Everest. I did that challenge as part of a team of 20, which included Hari Budha Magar, an Army veteran in the Gurkha regiment, who lost both his legs in Afghanistan. To this day, I’ll never quite understand how we got there, but we did, and we broke a few records along the way.’