Motor neurone disease remains a death sentence but researchers are making progress on deciphering the cause and developing better therapies.
The terminal condition has been thrust back to the forefront of Australia’s collective consciousness in recent weeks by high-profile cases.
The NRL community was rocked when South Sydney and Queensland forward Jai Arrow announced his sudden retirement aged 30 following his MND diagnosis.
Days later, former AFL great and FightMND co-founder Neale Daniher died after a 13-year battle with the disease he called “the Beast”.
MND encompasses a group of diseases that weaken and kill nerve cells, with patients gradually losing the ability to walk, talk, swallow and breathe.
“If you’ve got a diagnosis for MND, every week you lose the ability to do something you used to do – feed yourself, get off the couch, get in and out of the shower,” MND Australia chief executive Clare Sullivan told AAP.
“It’s debilitating and relentless in that constant decline. It’s heartbreaking.”
With no cure, the average life expectancy is two to three years from diagnosis.
The Australian Institute of Health and Welfare estimated it was the underlying cause of 781 deaths in 2023.
About 2800 Australians were suspected to be living with MND in 2025, equating to 8.6 people per 100,000.
“MND is surprisingly common for such a horrible disease,” Ms Sullivan said.
“Your lifetime risk is one in 300 and that’s quite startling for most people.”
A recent study by Sydney’s Macquarie University found the number of cases had tripled since the 1980s.
The researchers’ epidemiological analysis of deaths from MND showed Tasmania had 1.4 times – and South Australia 1.2 times – as many deaths due to the condition as NSW between 2019 and 2023.
MND Australia and other advocates are pushing for a national registry of MND patients to better model and track the disease.
“Once you know the cause, you can progress the treatment,” Ms Sullivan said.
“That baseline data is the key missing ingredient.”
MND was first recognised and described in the 19th century by French professor Jean-Martin Charcot and other neurologists but treatment options are still limited.
Earlier in May, the Therapeutic Goods Administration provisionally approved Qalsody as a treatment for some adults with ALS, the most common type of MND.
It is administered through a spinal infusion but only suitable for those who develop the disease due to defects in the SOD1 gene, equating to about two per cent of cases.
About 10 per cent of MND cases have a known genetic cause.
A study led by researchers from Melbourne’s Florey Institute focused on finding treatments for the 90 per cent of “sporadic” or unexplained cases using stem cells donated by 100 people with sporadic MND, including from Daniher.
Riluzole was discovered as first-line MND treatment three decades ago but is believed to only extend survival by two to three months.
The study showed riluzole, when used in combination with an anti-inflammatory drug and medication developed to treat dementia, was 6.5 times more effective at prolonging the survival of nerve cells in the laboratory.
“Our model appears to mimic aspects of the disease process in people with MND and paves the way for a new generation of research and therapeutic development,” associate professor Chris Bye said when the research was published in November.
The combination treatment still needs to be tested in a clinical trial before drawing firm conclusions, he cautioned.
