The England rugby World Cup winner said he is still ‘well’ and plans to launch a new fundraising campaign in the New Year to find a cure for motor neurone disease
Lewis Moody has said motor neurone disease is not incurable – there has just not been enough cash devoted to funding the necessary research to beat it.
The England rugby World Cup winner – who revealed he had the condition in October – said he is determined to take up Sir Kevin Sinfield’s fundraising mantle in a bid to conquer the disease which affects up to 8,000 Brits at any time.
Lewis, 48, raised more than £500,000 for the My Name’5 Doddie Foundation to help find a cure by completing a seven-day 500-mile bike ride from Newcastle to the Allianz Stadium at Twickenham south-west London in June and is already plotting his next venture.
Sir Kevin, who has raised nearly £12m since his late Leeds Rhinos rugby league team mate Rob Burrows was diagnosed in 2019, will set off on his seventh and final 200-mile slog running seven ultra-marathons in seven days on September 27.
Lewis, who has described now England rugby union coach Kevin as an ‘inspiration’, said money was critical to finding a cure for the degenerative nerve condition which triggers muscle weakness, stiffness and paralysis.
He said: “Motor neurone disease is a difficult thing to be diagnosed with, but even more so when you find out very little can be done.
“There’s a huge amount of people doing great research, putting a huge amount of time and effort in, but what’s needed is more awareness, more funding.
“People often say MND isn’t curable. But it isn’t incurable – it’s just underfunded.
“My energy is being placed into this space to try and generate as much financial support and awareness as possible to try and make a difference.”
Lewis said he was currently ‘well’ and nearly played in a recent charity cricket match at Taunton, Somerset, to raise cash for the cause before erring on the side of caution.
“I could have played today,” he said.
“It’s always weighing things up. I weigh everything up in the sense of, ‘is this the last time I might be able to do it?’
“And if I am going to do it, what impact is it going to have on me?
“My experience of playing cricket in retirement has sadly been enjoyable but calf, hamstring, broken finger – my body just can’t heal the way it did. It was better to leave these lads up to it and do their thing.
“It’s a weird disease. The specialists tell you you’ll never feel ill. I don’t feel unwell. I’m likely to never feel unwell.
“It’s hard to watch the slow decline of your physical state. That is a daily battle, mentally.
“But what you see is what you get. I choose not to linger in the sad spaces for too long.
“There is sadness, of course, but I choose to stay positive, to enjoy the time I have. My wife’s here, my kids are good. Until that changes we’ll learn and adapt.
“What you see is what you get. If I look good, I feel good and I just stay in that space.
“Sport more than anything else prepares you for challenges like this.
“You’re given loads of different obstacles, nothing that relates to a diagnosis like this, but mentally you’re given the opportunity to overcome obstacles weekly, daily.
“For me it was just another thing to figure out how to handle – ‘overcome’ is probably the wrong word – but to deal with.
“I’m doing it in that way. I’ve changed my mindset to what I can do rather than what I can’t do. So long as I stay in that positive space I remain positive.”
Lewis, who has a book and documentary coming out next month, said details of his next campaign venture would be revealed in the New Year.
“I’m trying to create the space for everyone to get together under one banner to do what we need to do,” he said.
“I feel I need to get as close to the finish line as possible.”
To donate to My Name’5 Doddie Foundation click here
To donate to Sir Kevin’s 7 In 7: The Grand Finale click here