It is as he recalls a gesture from Martin Johnson that the emotions hit Lewis Moody. With a warm smile and his trademark courage, the former England captain has confronted probing questions on his diagnosis with motor neurone disease (MND) as he unveils a new charitable challenge to support others like him and is happy to detail his symptoms and the uncertain road ahead. But the memory of Johnson’s recent supportive words during the Race to the Slater Cup, an endeavour to support another MND-afflicted former rugby player, stops Moody in his tracks.
“Johnno was fantastic when we did the Ed Slater ride about being really aware and seeing the level of fatigue that hit me as we were going along, and being able to say, ‘mate, it’s ok, take a rest’…” Moody begins before the words trail off. “Just him saying, ‘don’t worry, we’ve got it from here’.” It is put to Moody that it is probably the only time in his life that Johnson, that titan and captain of the 2003 World Cup-winning side, has ever told him to ease off. “It was,” he admits, recalling an old training ground punch from his former skipper on one of the rare occasions where Moody was not at full tilt with a chuckle.
Recognising that he can, or may need to, take his foot off at times is one of the adjustments that the 71-cap England international has had to get used to since his diagnosis in September. It says plenty about Moody that his mind turned to how he could help a community of which he is now a part almost immediately.
Within a matter of months, he and Kenny Logan, the great friend of the late Doddie Weir who is now a key figure within the My Name’5 Doddie Foundation (MNDF), had begun strategising over how best to raise awareness and funds to continue to fight MND.
Over seven days in June in the lead-up to the Gallagher Prem final, Moody will be joined by his teenage sons Dylan and Ethan and a collection of rugby icons to take on a 500-mile cycle ride from Newcastle to Twickenham. It is a circuitous journey that will take in the grounds that made Moody great – from Bracknell RFC, where he began his rugby life as a five-year-old, to Oakham School, with emotional stops at Leicester Tigers and Bath. Along for the ride, literally, will be Johnson, Jonny Wilkinson and Mike Tindall and a whole host of others beside.
It is a mark of the man just how many of his former teammates and rivals have committed their time; so, too, that this is far from his first fundraising endeavour. In the past, these have been to support children battling brain tumours; with his own situation in mind, there is a new cause.
“There’s a weird sort of satisfaction that comes from discomfort,” Moody explains. “I have to be more mindful of that stuff now. With MND, the specialists were cautious: be wary of extreme exertion, you will fatigue quickly, you’ll be more tired, look after yourself, all that type of stuff. There are different boundaries in place for me now but 100 per cent there’s nothing like having the opportunity to get together and feel a bit of discomfort together. Taking the race element out of it which is really nice, it’s just about getting from A to B. There’ll be plenty of complaining along the way I’m sure.
“I suppose from a personal point of view, there is something about wanting to show that I can still do things like this. However progression occurs, and whilst having to slightly temper my mindset a little bit from where it would have been in the past, it is not about winning the race or anything, it’s about getting to an end.”
The haste with which this has been arranged is not a coincidence. Moody, never one to sit on the sidelines, had wished to be an active participant, and does not know how the degenerative disease with which he has been diagnosed will progress. “Being in a privileged position of having a platform to use, I want to have the biggest impact possible,” he makes clear. “I have done a challenge every year since retiring. Some years I have done more than one. I really wanted to make sure that I got another one in. I don’t know how many I have got left to do, so the reason for it being so soon is to make sure that physically I feel like I can contribute and get through it.”
For now, his symptoms are reasonably stable. “I’m good at the moment. The only sort of significant noticeable change is still in my hand. The shoulder strength is diminished as it was, but not significantly reduced since diagnosis. Without a shadow of a doubt, the hardest thing is noticing little things every day. The other day I noticed a slight difference in my finger strength. Whether it was opening a bottle top, holding a fork, cutting your food – those little things mentally are a challenge when they present themselves, but I think within a day you can move past it and just focus on functional things I can do, rather than things that I’m less able to. But at the minute, touch wood, everything still remains slow, so hopefully it will continue.”
Moody speaks with admiration for the work done by Weir and Kevin Sinfield, among others, in already raising many millions to fight MND. He speaks of “picking up the baton” and taking the drive that took him to the top of the rugby world into this venture. “In some ways I have found it a privilege. It is a remarkable space you enter, this MND world, the individuals that have worked so hard and so long and the uncertainty that surrounds it.
“Weirdly, that news gives you certainty because it allows you to focus on the things that are important in life. Life is uncertain for all of us and I have been given the opportunity to have a really clear vision of what I want to do with my time now. And that is to spend it with the people I love and that is doing the things I love and doing it with purpose. Being a part of this campaign, part of this wonderful foundation, gives me purpose.
“I think the space I’ve arrived in is vastly different to the one that Doddie and Rob [Burrow] arrived in, in that I feel a sense of hope. When I speak to specialists, they speak about hope. I don’t know if that would have been the case when those guys were diagnosed.
“Since that moment you become slightly more aware of the realities, the science and research that is going on but there is genuine hope a cure will be found. When we say cure, whether that is like AIDS and it is about symptom repression, less so a complete cure and it will probably be a combination of things that gradually diminish it. We have already found something for the genetic form of MND which is almost a means of reversing the symptoms for the three per cent of people that have the genetic form so now it is about the 97 per cent.
“The old competitive, fighting spirit that has languished away from the spotlight for a while, this little platform has given my teeth a little bit more sharpness and readiness to get stuck into this. That hope comes from that space. There is so much being done, there are so many people applying for grants for various different things. But hope is one thing – we need to turn hope into genuine actions that lead to outcomes and that is what people living with it want to see.”
The Lewis Moody & Friends Cycle Challenge is a 500-mile, seven-day cycling challenge from Kingston Park Stadium, Newcastle, to Allianz Stadium, Twickenham, taking place from 14-20 June 2026. For more information or to support the challenge, please visit: https://uk.emma-live.com/LewisMoodyCycle.
