Matters of Interest: Motor Neuron Disease (MND)

The Hon. H.J. GUMBYS (15:53): 'When all is said and done, more is said than done.' That was Neale Daniher's way of cutting through, and that is a good place to start, because motor neurone disease, more commonly known as MND, is a disease that demands actions not just words. MND destroys the nerve cells that control movement. Walking, talking, swallowing, breathing, all go progressively without stopping. There is no cure, no treatment that reverses it, and a person who is diagnosed lives only an average of 27 months. It has been described as the worst diagnosis a doctor can deliver.

One thing that I have come to realise, now that I am older, is that many varied experiences touch your life. Motor neurone disease is one such experience. During my previous employment at BAE Systems Edinburgh, a workmate of mine, David Bowles, lost his life to MND. It started in a subtle manner: the occasional unexpected dropping of various items slowly led to inexplicable falls and then he finally received the tragic diagnosis. It was not long before he could no longer work, but we kept in touch as much as possible.

Another workmate, and a mate in the truest sense of the word, Keith Robinson, was by his side to the end. He only passed away a couple of years ago, but as we have seen with the example of Neale Daniher, Dave's death has led to many important conversations. It led to BAE Systems advanced manufacturing organising MND fundraising for our own Ice Bucket Challenge. Workers were able to nominate a candidate to have a bucket of ice tipped on them. A bidding war saw the winner secure the right to be the employee who tipped that bucket. Obviously, a few managers were very popular targets. We raised thousands of dollars for MND research. After Dave's sad passing, this became his most enduring legacy at BAE Systems.

If there is one person, though, who put MND on the national consciousness in Australia, it was Neale Daniher. He was diagnosed with MND in 2013, a disease he simply called 'the beast'. He was then 52, a well-known AFL figure, a former Essendon captain and a long-time Melbourne coach, and he had just been told that he had a terminal illness with no treatment. Rather than retreat privately, Daniher chose to fight publicly. He co-founded FightMND alongside MND researcher the late Dr Ian Davis and businessman Pat Cunningham. He became the organisation's face, its voice and its relentless engine. Even as 'the beast' tightened its grip, he showed up, at MCG fundraisers, at press conferences and at public events, always donning his blue Big Freeze beanie and a smile that defied everything that was happening inside his body.

In 2025, he was named Australian of the Year. Sadly, Neale died on Monday 26 May, aged 65, 13 years after a diagnosis that should have given him only two. In those hard-fought 13 years, the organisation he built raised almost $120 million. MND went from underfunded and overlooked to an accelerating international research field, with active clinical trials now targeting the specific genetic mutations that drive the disease. That shift happened because funding followed awareness, and awareness followed Neale.

In South Australia, the Motor Neurone Disease Association of South Australia (MNDSA) has been doing the ground-level work for nearly 40 years. They are the only dedicated MND support organisation in this state. Right now, they support over 150 people, coordinating care, loaning equipment and providing occupational therapy, counselling and NDIS support. Every month, six to eight South Australians die from MND. Another six to eight are newly diagnosed. In this difficult time, many of the people diagnosed will pick up the phone to MNDSA for the first time. While this time in their lives may be their most difficult, I am grateful that the team at MNDSA will be there to guide them.

However, despite this, South Australia was until recently the only mainland state where the government did not provide ongoing funding to the MND peak body. The Malinauskas Labor government has changed that. A $4 million commitment over four years will provide game-changing support for MNDSA to deliver specialist care, treatment, equipment and more. It is a commitment I firmly believe will make a real difference in the lives of people like my old mate Dave.

Today, it is likely that two Australians will be diagnosed with MND and two will lose their lives to it. By 2050, the number of people living with this disease is projected to nearly double. There is no cure—still no treatment to stop it and still not enough awareness of its impact. But to Dave's family, to Neale's, to those who have lost loved ones and those who are living with MND in South Australia right now, please know that the momentum is real, in the research and the funding. We stand with you in this fight.