When Neale Daniher walked out onto the MCG for the last time, he could no longer speak clearly. His body had been progressively stolen from him over more than a decade by motor neurone disease, the illness he called “the Beast.”
The outpouring of grief that followed his death last month was not just for a football legend. It was for a man who had refused to let a terminal diagnosis become a reason to go quietly.
Just days before Daniher’s death, NRL star Jai Arrow stood up and told the world he had also been diagnosed with motor neurone disease. Arrow is 30 years old, an elite athlete at the peak of his physical powers.
His announcement shocked many Australians who still think of MND as something that happens to the elderly. It does not. And this Sunday, World MND Day, is a moment to set the record straight about a disease that is taking more Australian lives than ever before.
Motor neurone disease attacks the nerve cells that carry signals from your brain to your muscles. When those cells are damaged or die, the messages stop getting through. Muscles weaken, then stop working altogether. The ability to walk, speak, swallow and breathe can all be lost, sometimes within months of the first symptoms appearing.
What makes MND particularly cruel is that the nerve cells cannot repair or renew themselves. The damage is permanent, and it compounds. Most people diagnosed with MND die within two to five years.
There is no cure.
Early symptoms are easy to miss or dismiss. A little slurring of words. Tripping more often than usual. Feeling clumsy with your hands. These things get blamed on tiredness, stress or ageing. By the time a definitive diagnosis is made, often after months of tests and specialist referrals, the disease has already advanced.
Daniher’s death and Arrow’s diagnosis have arrived in the same fortnight, and together they have done something important: they have made MND impossible to look away from.
Daniher was diagnosed in 2013 and spent the years that followed turning his illness into a movement. The Big Freeze at the MCG became one of Australian sport’s most recognisable fundraising events, with AFL stars and celebrities taking a plunge into an ice bath to raise money for research. Over the years, those efforts generated more than $100 million for MND research. He was named 2025 Australian of the Year in recognition of what he had built.
Arrow’s situation adds a different dimension. He is young, he is physically extraordinary, and his diagnosis has reignited questions about whether repeated head knocks in contact sports could be contributing to MND risk.
Several international studies have found that former professional footballers, rugby players and gridiron players develop MND at rates significantly higher than the general population. The science is not settled, but the pattern is concerning enough that sporting bodies around the world are paying close attention.
Meanwhile, Queensland construction couple Quentin and Kylie Birt made headlines earlier this year when they donated $40 million to fight MND, a contribution that reflects the kind of private momentum Daniher’s advocacy helped create.
MND is classified as a rare disease, but that label is increasingly hard to justify. Research published in the Medical Journal of Australia this year found that MND-related deaths in Australia have more than tripled since the 1980s. In 2023, MND killed 781 Australians. That is nearly two thirds the number who died on Australian roads that year.
Unlike road deaths, MND receives a fraction of the political attention and public investment. Researchers are clear that population ageing and better diagnosis do not come close to explaining a three-fold rise in a single generation. Something else is happening, and we do not yet know what it is.
Rates are not even across the country. Australians living in regional areas are 40 per cent more likely to die from MND than those in major cities. Tasmania and South Australia have significantly higher mortality rates than New South Wales.
When a disease clusters geographically, it suggests environmental factors are at play. But because MND is not a notifiable disease in Australia, we do not have the national data needed to investigate what those factors might be.
Research into MND is accelerating. One drug, tofersen, has recently been provisionally approved by Australia’s Therapeutic Goods Administration for people with a specific genetic mutation that causes MND.
It does not work for everyone, but for the small subset of patients it targets, it meaningfully slows the disease’s progression.
Australian biotech company Neurizon Therapeutics is currently running a late-stage clinical trial of its drug candidate NUZ-001 for the most common form of MND. The company recently passed the halfway mark in recruiting its 240 participants, with results expected in early 2027. This week it secured a long-term supply agreement for its active ingredient, a sign of growing confidence in the program.
These are reasons for cautious hope. But for the hundreds of Australians diagnosed this year, hope is not yet a treatment.
World MND Day on 22 June is an opportunity to learn, donate and raise awareness. In Daniher’s memory, and for the thousands of Australians living with MND right now, the most powerful thing most of us can do is make noise.
The Beast took Neale Daniher. But the movement he built is still very much alive.
