Which disease has an annual death rate that is two thirds of the nation's road toll - and is getting worse? The same condition has numerous, hugely famous patients and patrons at home and around the world - yet we don't know why most cases occur. Now, research into Motor Neurone Disease has identified clusters around Australia - pushing one state to make a world first move.
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TRANSCRIPT
Whether they were Bunnies fans or foe- a Gold Coast stadium ((CBUS Super Stadium in Robina)) was on its feet as Rabbitohs player Jai Arrow walked on the field for his 99th appearance on the weekend.
It is three months since a diagnosis and his team made sure he will never walk alone, even when the "Beast" of motor neurone disease robs him of the ability.
MND affects around eight in every 100,000 Australians: it causes deterioration of major functions of the body and patients lose their ability to walk, talk and breathe unassisted.
The path from diagnosis to death is on average between two and three years.
There is no cure and perhaps more troubling - there is no known cause either.
“90 per cent of MND cases are sporadic, which means there is an environmental cause. So that is why we need the data, so we can drill down into what is causing (it) and of course the rates are increasing every year .”
That was Helen Dalton - an independent New South Wales government representative for a seat that covers the Riverina area, which has seven times the national average number of cases of Motor Neurone Disease.
She is pointing to what she's noticed and there are now studies that back it up; where you live impacts how likely you are to get MND.
Professor Dominic Rowe - a world-leading expert in the disease at Macquarie University - has done the research and puts it in plain, stark terms.
“It would come as a shock to all Australians to know that if you live in rural or regional Australia, you are 40 per cent more likely to die from Motor Neurone Disease than if you live in the city. But even within the city from our work, which is ongoing, suggests Motor Neurone Disease is variable depending on where you live, what you do for work and what you do for recreation.”
The research emerging out of Australia and overseas is compelling - and concerning.
Professor Rowe's team has found the total number of MND deaths in Australia has more than tripled over the past 37 years, from 238 in 1986 to 781 in 2023.
It also found evidence environmental risk factors, including exposure to metals, pesticides, head injury and viral infections.
And those findings are why MND is now a notifiable disease in New South Wales; it means cases will be registered, tracked and data is collected and mapped.
Professor Rowe has 270 patients.
Ron Hobden - "Hobbo"- is one of them.
“When I first saw Hobbo two and a half years ago, if I had a mechanistic therapy, I could say to him , 'it's okay Hobbo, I've got your back'. I don't have that yet, that is what this notification system will allow us to do. To get to the mechanism and the cause of sporadic motor neurone disease.”
Hobbo couldn't attend the New South Wales government announcement in Sydney - and his wife Annie Hobden spoke for him and their family.
“We were gobsmacked too, when Hobbo was diagnosed three years ago that this didn't exist. Why didn't we know, why is MND occuring in places like the Murray. We moved from Gunnedah from Regional New South Wales and we made the hard choice to move here because we wanted the best possible care and we couldn't access services in Gunnedah. So this data registry is also going to help set up better services and infrastructure for people like us.”
New South Wales Health Minister Ryan Park says the register will create a strong database and provide much-needed clues.
“And then people in the research space, like Professor Rowe, like the team down at Professor Ubery's research lab in the University of Wollongong will then be able to access that through ethics approval to paint a picture of that and get a better picture of what is happening, why it is happening, where it is happening and who it is happening to.”
We already know it is not just happening in New South Wales.
That's why the Hobden family are among those leading calls for a nationwide register for motor neurone disease.
“And Hobbo and I really want to say, if New South Wales can do it, why can't the rest of Australia? MND doesn't stop at borders, so why should we?”
The Macquarie University paper - published by Rowe in May - makes the case for a national plan.
It found people living in Tasmania were 40 per cent more likely to die from MND than those in New South Wales.
South Australians had the second highest mortality rate in the country.
Why?
That's where research comes in.
Since Jai Arrow went public with his diagnosis - he's garnered 1 million dollars for the cause.
And he follows in the wake of another sporting hero: the late great AFL player, Neale Daniher who died around the time Arrow was diagnosed in May [[2026]].
By this year, Daniher's Big Freeze event had raised more than 115 million dollars for MND research, via his charity, Fight MND.
And before his death, his voice was gone, but his ambition burned bright as 2025 Australian of the Year, 12 years on from his diagnosis.
“It lit a fire within me, a determination to fight for those who were currently affected and those who would face it after me."
A determination that is now shared with many.
