As Australians prepare to pull on blue beanies for Big Freeze 12 this King’s Birthday weekend, motor neurone disease (MND) is once again in the national spotlight.
Rugby league star Jai Arrow’s shock MND diagnosis had already brought renewed attention to the disease when, just five days later, AFL great and FightMND co-founder Neale Daniher died after his own long battle with the condition.
WATCH VIDEO ABOVE: Australia mourns AFL legend Neale Daniher
Know the news with the 7NEWS app: Download today
Now, as Arrow prepares to toss the coin at Monday’s Big Freeze clash between Melbourne and Collingwood, and the NRL launches “Jai July” in support of the former South Sydney forward, MND is once again at the centre of a national conversation.
MND is a progressive neurological disease that attacks the nerve cells responsible for controlling movement, gradually affecting a person’s ability to walk, talk, swallow and breathe. There is currently no cure.
For many Australians, it can feel as though MND is appearing more frequently than ever before.
Yet despite being the third most common neurodegenerative disease after Alzheimer’s and Parkinson’s, researchers say there is still no clear answer as to whether more Australians are actually developing the disease, or whether greater awareness and improved recognition are simply making it more visible.
Dr Thanuja Dharmadasa, a neurologist and clinician-researcher at The Florey and the Royal Melbourne Hospital, told 7NEWS.com.au there are several reasons Australians are hearing more about the disease.
“We’ve got 2700 people in Australia living with MND. Every day we actually diagnose two people, while two people die from the disease,” Dharmadasa said.
While MND remains uncommon, she said growing awareness means Australians are now far more familiar with it than they were a decade ago.
“When I started doing this, you would say I’m working in motor neurone disease and people wouldn’t really understand what that is,” she said.
“And now, of course, you can say MND to almost anyone and they understand what that is. Or at least they’ve heard of it.”
That awareness has been fuelled in large part by Daniher’s public battle with the disease.
Diagnosed in 2013, Daniher transformed a little-known condition into a national cause, helping establish FightMND in 2014 and inspiring the Big Freeze campaign that has raised more than $140 million for research and care.
Held annually on the King’s Birthday public holiday, the Big Freeze sees AFL identities slide into icy water while millions of Australians don blue beanies to raise money for MND research and care.
His death last month, after surviving more than 13 years with a disease that typically carries an average survival time of just 27 months, sparked tributes from across the country and renewed questions about a condition that many Australians feel they are hearing about more often than ever before.
Are there actually more cases?
The question of whether MND is becoming more common remains one of the most difficult for researchers to answer.
FightMND director of research and programs Dr Bec Sheean said researchers are still trying to determine whether rising diagnosis numbers reflect a genuine increase in cases or simply better recognition of the disease.
“It’s a really interesting question, and it’s quite a tricky question to answer,” Sheean said.
“We’re really hoping to be able to fund a national incidence study of MND in Australia and to look at a way that we could set up some sort of registry or database so that we can really truly monitor those numbers because we just haven’t had the research to be able to answer that.”
She said several factors could be contributing.
“It could be that numbers are increasing or that because of the awareness of the disease, that it’s being diagnosed more often.”
Improved reporting may also play a role.
“If you’re living with motor neurone disease, and because of that you have a fall, you might hit your head and die because of that, sometimes that was reported as a fall and not as a complication of MND,” she said.
“So it could be a combination of incidence increasing, more awareness, or that the reporting is better.”
Dharmadasa agreed that there are multiple layers to the question.
“It’s a little bit to do with an ageing population, but not solely attributed to that,” she said.
“Better detection, better awareness. It’s also better patient registration of the disease.”
But she said researchers cannot yet rule out the possibility that there may be a genuine increase in incidence driven by changing genetic and environmental factors.
The challenge of diagnosis
One of the biggest hurdles facing people with MND remains getting diagnosed in the first place.
Unlike many other neurological conditions, there is still no single test that can definitively identify the disease.
“It’s not like other things where if you’ve had a stroke or brain cancer, you do an MRI, you see it on there, and then that gives you the answer,” Dharmadasa said.
Instead, diagnosis relies on neurological assessment and ruling out other conditions. The result is that many patients spend months, if not years, searching for answers.
“The pathway to get to that diagnosis can be about 14 months on average,” Dharmadasa said.
“People see several different types of doctors or physios or other people because at that time their disease isn’t clear.”
For patients and families, that uncertainty can be deeply distressing.
“Living with uncertainty and not having an answer from a patient’s point of view and a family’s point of view is incredibly challenging,” she said.
Much of the research now being funded through FightMND is focused on finding ways to identify the disease earlier.
Dharmadasa’s work combines advanced brain imaging, blood-based markers and other emerging technologies to detect the earliest signs of nerve damage.
Researchers believe earlier detection could eventually help future treatments work more effectively.
“We know that for any drug to work really, the earlier we can target it, the better it will be because we can save more of those nerves that are dying,” Dharmadasa said.
“If we target things when things have already really escalated and degenerated, things sometimes become irreversible.”
What a decade of fundraising achieved
Before FightMND was established, Sheean said there were few dedicated MND researchers in Australia, no clinical trials, and limited public awareness.
“There was such little funding, and there just wasn’t the funding to really have that workforce really focused on finding a cure,” she said.
“There was also no awareness, so diagnosis was really isolating.”
Today, more than 600 Australians have participated in clinical trials supported through FightMND-backed initiatives, while a national workforce of dedicated MND researchers has emerged.
Research funded by the organisation is helping develop new treatments, support clinical trials and improve standards of care.
“The Big Freeze has not just created that activity in the research workforce, it’s that funding year after year, building that momentum and absolutely creating hope for those families who get diagnosed,” Sheean said.
As Big Freeze 12 approaches, both researchers say the greatest legacy of Daniher’s movement may be that MND is no longer a disease Australians have never heard of.
And while a cure remains elusive, awareness is now helping drive the research that could one day change that.
“From where we were 10 years ago to now,” Sheean said, “it’s just incredible to see how much progress has been made.”
Australians can support FightMND and purchase a Big Freeze beanie ahead of Monday’s annual fundraiser here.
