“It’s not good enough when a patient sits in my room and says, ‘Why do I have this disease?'” says Professor Dominic Rowe. Photo: Erin Hee.
The occurrence of motor neurone disease (MND) in the Riverina is seven times the Australia average and Macquarie University’s Professor Dominic Rowe wants to know why.
In February 2025, he launched an MND Surveillance Centre to monitor cases and was in Griffith Base Hospital on Saturday (31 May) to make contact with local GPs and patients in the area.
Overseas studies suggest exposure to a toxic bacteria known as blue-green algae in waterways over a long period could be a factor linked to high MND rates. Frequent algal blooms in Wagga’s Lake Albert and Griffith’s Lake Wyangan has led to speculation that this may be a cause.
“Just the last couple of weeks off South Australia, there’s been a huge algal bloom that has killed millions of fish and sharks; and crabs and octopus and squid and cuttlefish,” Professor Rowe said.
“Nothing is immune, and most of those deaths are neurotoxic deaths. So these algal blooms produce neurotoxins that damage the nervous system of fish.
“We know that algal blooms, or harmful algal blooms are more common in our waterways, in our fresh waterways, because of all the nutrients and the herbicides and introduced species in our waterways, so there is a website on Water New South Wales that actually monitors harmful algal blooms so that people don’t pull water off to water their stock so if the water is dangerous to livestock.”
MND is a neurodegenerative disease that attacks nerves in the brain and spinal cord, and affects someone’s ability to walk, speak, swallow and breathe, eventually leading to death. It’s not infectious, but is fatal and has no cure, and it has increased as a cause of death in Australia by 250 per cent over the past 30 years.
Despite this, it is not a notifiable disease, meaning the government does not track cases.
“Rather than waiting for government to do it, we set up the NSW MND surveillance Unit; we let the data talk,” Professor Rowe AM said.
Professor Rowe thinks that it’s a “no-brainer” that MND should be classified as a notifiable disease, even if it isn’t infectious.
“If you had something that was going on that was killing 800 people a year, don’t you think that we should know about that?” he said.
“There is compelling evidence that this is an environmental condition. If that’s happening in the environment, what is it?”
You can’t “catch” MND from someone else, but Professor Rowe has seen people develop MND following a loved one with the condition.
“I’ve looked after 10 husband-wife pairs, where the husband has died from MND, and then the wife has developed MND,” he said.
For a disease to be notifiable, it must be contagious and may meet one or more of the following criteria: be preventable through vaccination or contact tracing, have a noticeable trend or be fatal. But some non-infectious diseases such as cancer and silicosis are considered notifiable and there’s a national registry that tracks cancer cases.
“In the year 2022, 83 Australians died from MND, and that’s not a notifiable disease,” Professor Rowe said. “In the year 2022, 12 people died from silicosis, and that’s a notifiable disease.
“The reason why we started the surveillance unit is we think that this is important and that there are important clues to what causes MND and the mechanisms that make people die.”
Research into the link between MND and the Riverina has hit multiple speed bumps over the years, including when Professor Gilles Guilemin’s research collapsed from a lack of funding in 2023.
Despite that, Professor Rowe refuses to give up hope. He believes that gathering data and mapping prevalence is the first step to finding a cure.
“It’s not good enough when a patient sits in my room and says, ‘Why do I have this disease?'” he said.
“We need more data. I refuse to believe that this disease is incurable.
“It’s underfunded, and we don’t understand its complexity, but it’s not incurable.”
If you’re an MND patient in Wagga and Griffith and would like to assist with Macquarie University’s research, you can email the research team on mnd_surveillance@mq.edu.au.
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