Australian of the Year Neale Daniher has brought much-needed awareness to motor neurone disease, which is in desperate need of funding. Dr Ruhie Vaidya writes.
AS BOTH a doctor and someone who has seen the devastating effects of motor neurone disease (MND) firsthand, I was among the many Australians who rejoiced when AFL legend and MND campaigner Neale Daniher was named the 2025 Australian of the Year.
It was a ground-breaking victory for the medical community who have worked tirelessly for decades to find a cure for this incurable terminal illness. For the thousands of Australians living with MND and their loved ones, Daniher’s recognition gave us a voice and hope for the future.
Every day in Australia, two people are diagnosed with MND and two people die from it. In January 2019, my dad was one of them. He was just 60 when he lost his harrowing three-year battle with the disease.
Despite being considered by medical professionals as one of the cruellest diseases to exist, the sad reality is that MND is widely misunderstood and grossly underfunded. In 2024-2025, the Australian Government invested just $2 million to support MND research. In comparison, $71 million went into cancer prevention, treatment and screening — which is entirely warranted, of course.
The point is that MND receives disproportionately low funding compared to many other major diseases despite its considerable cost and impact on individuals and the healthcare system. According to the MND Australia Deloitte Access economics report in 2015, the per-person cost of managing MND was $1.1 million, which is substantially higher than many other chronic conditions due to the extensive care needs associated with it.
MND needs to be taken seriously. Here is why greater awareness and funding for life-changing MND research is so desperately needed.
MND is brutal
While people may have heard of MND, many are unaware of the horror it wreaks on those it affects.
MND is a progressive neurodegenerative disease where the motor neurons in the brain and spinal cord degenerate over time. This causes the muscles they supply to weaken and waste away. People progressively lose the ability to walk, talk, swallow and eventually breathe.
They end up completely paralysed, confined to a wheelchair, entirely dependent on others, fed through a tube from their abdomen directly into the stomach, reliant on a ventilator to breathe overnight and barely able to speak. While it robs them of all movement, their senses and mental functioning remain fully intact, so they are acutely aware of what is happening to them.
Imagine if you could never again hug a loved one, enjoy your favourite meal, call out for help, scratch an uncontrollable itch, or even catch your breath. This is the reality of living with MND.
I watched my dad lose himself bit by bit every day for three years. It is a cruel fate.
MND kills everyone it affects
No one survives MND. While the rate of progression varies from person to person, it is universally fatal. Daniher is amongst the rare 10 per cent of people who survive a decade or more with the disease. Unfortunately, for most, the prognosis is far grimmer. The average life expectancy after diagnosis is just two to three years.
MND can strike anyone, anytime
As Daniher stated when he received the accolade, MND doesn’t discriminate. It can happen to anyone regardless of age, gender, ethnicity, or pre-existing health. The exact cause is still unknown, meaning no one is safe from getting it.
MND is more common than you think
While it is traditionally considered “uncommon” in terms of prevalence (the number of people living with it at any given time), that’s only because of its incredibly high mortality rate; with so many people dying from the disease, the number of people living with it remains low.
However, the lifetime risk of getting it (the number of people who will get MND across the span of their whole life) is one in 300, which is much higher than most people realise.
There is no cure
Despite the unwavering efforts of researchers around the world, no cure has been found for MND. There are very few treatment options and they have minimal effect on slowing progression or prolonging life.
Clearly, there is still so much we don’t know about this harrowing disease. Social awareness campaigns like the global phenomenon Ice Bucket Challenge and locally the Big Freeze initiated by Daniher and the FightMND organisation, have been instrumental in raising much-needed funds for MND research.
But it isn’t enough when you consider the enormous cost and impact of the disease. MND awareness can’t just be a fad. As Daniher made clear in his acceptance speech, greater, widespread and ongoing awareness is essential. Increased funding for research is our only hope of finding a cure, so that we may one day live in a world free from MND.
Dr Ruhie Vaidya is a GP with the Royal Australian College of General Practitioners, writer and MND advocate.
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