“He’s a brain. Like he’s an absolute academic… the pure cruelty, man. We’re all lost for words.” Jeremy Paul, on The Good, The Bad & Rugby ANZ.
Jeremy Paul wore the Wallabies No 2 jersey a decade before Nathan Charles did, and on Monday he could not find the words. “He’s a brain. Like he’s an absolute academic,” Paul said. “The pure cruelty, man. We’re all lost for words.”
Charles, 37, is the former Wallabies hooker who was born with cystic fibrosis and still played four Tests. He told Justin Harrison on Stan Sport last week that he has motor neurone disease.
Paul played 72 Tests at hooker and won the 1999 World Cup. Three weeks ago he said the Wallabies would beat the Springboks in Perth. On Monday he opened The Good, The Bad & Rugby ANZ with this instead, beside host Andy Rowe, Kieran Read and Justin Marshall.
What do you say to a man who beat one incurable disease and has been handed another?
The boy who was not meant to live past ten
Paul told the story the way Australian rugby has told it since 2014.
“This guy was born with cystic fibrosis and he was told, his parents were told, he wasn’t going to live past the age of 10. Not only did he live past that, he played for the Wallabies four times. It’s an extraordinary story, his journey and his determination, man, to not only play a contact sport, but play professionally.”
Charles was diagnosed with cystic fibrosis as a baby. He is believed to be the only person with the condition to have played professional contact sport anywhere.
His Test debut came off the bench against France in June 2014, after Stephen Moore’s knee injury. Ewen McKenzie said at the time that “he seems to have defied science and defied logic”.
McKenzie, who said last month that Australia has never settled its No 10, gave him his first cap. Charles played Super Rugby for the Western Force and the Melbourne Rebels, covered for Clermont, finished at Bath and retired in 2018. He later ran RugbyWA as chief executive.
Then came eight months of symptoms nobody could name.
How long have I got: the Nathan Charles MND diagnosis
Paul had watched the Stan interview.
“It was a tearjerker watching the interview… where his question was how long do I have, like because of the rarity of the disease, because of the unknown, no treatment plan. So there’s just not enough information about it.”
Charles’s own account, reported by the ABC and AAP on Wednesday 1 October, is harder to read than Paul’s version of it.
“My first question was, ‘How long have I got?'” he said. He called the disease “extremely challenging and overwhelming. And, yeah, just at times quite cruel”.
He is already using mobility aids. “I’m already greatly impacted by it,” he said. His first thought, he told Harrison, was for his family, including his fiancee Steph.
Paul had spent the rest of the hour previewing Eden Park and the Wallabies side that beat the Springboks 42-38. None of it was said with this voice.
Curing the future
Marshall, 81 Tests at halfback for the All Blacks, put the fundraising in its place.
“The big problem is that there is no cure, and that’s what this fundraising is all about. The fundraising for these guys is not about themselves and curing them. It’s about curing the future and trying to get on top of this disease that is so cruel.”
He had seen it before. Joost van der Westhuizen, who died in 2017, started the J9 Foundation while he was still able to travel. Doddie Weir, who died in 2022, built My Name’5 Doddie Foundation into one of the biggest MND funders in Britain. Rob Burrow died in 2024.
Read brought up the man who ran for Burrow.
“I’ve just seen Kevin Sinfield, I think, done seven ultramarathons, seven days… for the Super League final. Those things are just epic and it just shows how much support that’s been put out there.”
Sinfield finished his seventh ultramarathon in seven days at Old Trafford on Saturday 3 October, before Wakefield beat Warrington in the Grand Final. His challenges have raised more than £13 million since 2020.
Marshall’s list of the game’s losses ran closer to home. Jarrod Cunningham, the Hawke’s Bay and London Irish fullback, died of the disease in 2007. Carl Webb, the Queensland and Australia rugby league forward, died in 2023. Nobody on the panel could explain why rugby keeps producing these names, and nobody pretended to.
The question nobody can answer yet
Paul raised it anyway.
“The other concern is, is there a trend with potentially contact sport?… I’m not a specialist, so please don’t quote me on that.”
He then said something that was new.
“We were a part of a study here in Australia. Our doctor Martin Raftery actually helped put it together with World Rugby, the CTE and the brain scanning and all that sort of stuff. And I just feel like the more data we can get, obviously from past players, the more data they can do, and if there’s any linkage… I just think the more tests that we can do and the more data we can get around the world, the better it will be.”
The research is unfinished. Glasgow University found in 2022 that former Scottish internationals developed the disease far more often than the general population, and nobody has shown why. Paul did not claim a link. What he described is a former player volunteering his own brain for the research. Until the data exists, that is the only honest answer to the question.
Where to give
The show published the links with the episode. FightMND and MND Australia fund research and care in Australia. My Name’5 Doddie Foundation funds research in Britain.
MND New Zealand covers the country Read and Marshall were speaking from. A GoFundMe page has also been set up for Charles and his family.
Read next: Duane Vermeulen’s family flew to Belfast to watch the end of his career, and what a career costs the people around it.
Your turn: the name you think of
Everyone in rugby has a name that comes to mind when this disease is mentioned. Joost for South Africans, Doddie for the Scots, Rob Burrow for the north of England. Nathan Charles is now that name for a generation of Australians. Who is yours, and what did they do for the game?
Frequently asked
What has Nathan Charles been diagnosed with?
Motor neurone disease. Charles, 37, announced it in an interview with Justin Harrison on Stan Sport, reported on Wednesday 1 October. He had experienced symptoms for eight months before the diagnosis.
How many Tests did Nathan Charles play?
Four, in 2014 and 2015. He debuted off the bench against France in June 2014. He is believed to be the only person with cystic fibrosis to have played professional contact sport.
How can people support Nathan Charles and MND research?
FightMND and MND Australia in Australia, My Name’5 Doddie Foundation in Britain and MND New Zealand all take donations. A GoFundMe page has been set up for Charles.
Where did Jeremy Paul say this?
On The Good, The Bad & Rugby ANZ, recorded on Monday 5 October with host Andy Rowe, Kieran Read and Justin Marshall.
