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A cluster of motor neurone disease (MND) cases along Australia’s Murray River has prompted investigation into potential environmental risk factors. The search for answers has gained urgency as the number of MND diagnoses continues to rise. One man’s story sheds light on a possible connection between the disease and the river region, sparking crucial research into this devastating neurodegenerative condition and potential MND hotspots.
Unexplained Cases of Motor Neurone Disease Spark Investigation
Andrew Danson’s father, Peter, played football in his youth, seemingly a typical Australian experience. However, the location of his games later took on profound significance, potentially holding clues to understanding motor neurone disease, a condition that has puzzled medical experts for over a century.
‘He passed away from motor neurone disease in 2020,’ Andrew explained.
MND, a rare neurodegenerative disorder, disrupts the communication between the brain and muscles. Currently, there is no cure, and the cause remains elusive.
Andrew paused, then revealed, ‘Four of the men who played on his football team also developed motor neurone disease.’
Peter and his teammates played in Mildura, a town situated on the banks of the Murray River in Victoria. Sadly, they are not unique; other individuals with ties to the Murray have succumbed to MND.
Belinda Alcott, a resident of Griffith, witnessed her father Warren’s (“Woz”) health decline after he experienced weakness in his arms.
Warren, who spent considerable time working in towns within the Riverina region of New South Wales, was diagnosed with both kidney cancer and MND. Doctors deemed the operation to treat his cancer too risky due to the progression of his motor neurone disease. Belinda described his decline as ‘a quick decline’.
‘It was really awful for our family,’ she recounted.
‘He was the kind of person who would always do everything on his own, never asking for help, and stubbornly strong and determined.
‘He was also very proud and private in terms of personal hygiene stuff. To see him starting to need help for the simplest things was a real sign of how bad he was.
‘And although we didn’t mind helping him or of course weren’t judging him for needing help, we knew how humiliating it was for him.’
Woz’s battle with MND ended last November through voluntary assisted dying.
Rising MND Rates and Potential Hotspots
The incidence of MND is increasing nationally, with deaths in Australia nearly doubling in the last three decades. However, certain regions show even higher rates, prompting researchers to investigate the underlying causes.
MND, affecting approximately eight people per 100,000, leads to rapidly progressing muscle weakness.
Also referred to as amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s disease in the United States after the famous baseball player, the condition affects motor neurons that control movement, speech, breathing, and swallowing.
For years, experts and residents have expressed concern that several towns along the Murray River, particularly in the Riverina region of NSW encompassing Wagga Wagga, Griffith, and Narrandera, have become MND ‘hotspots’, exhibiting diagnosis rates up to seven times the national average.
While genetic factors explain around 10 percent of cases, the remaining 90 percent remain unexplained.
Environmental Risk Factors in Motor Neurone Disease
A growing body of research suggests possible links to environmental factors, with researchers examining pesticides, heavy metals, and harmful bacteria as potential contributors.
One ongoing investigation by Macquarie University’s Motor Neuron Research Centre focuses on the blue-green algae blooms prevalent in the Riverina region as a potential factor in the increased disease rates.
The potential connection between blue-green algae and MND has been considered since the 1980s. However, establishing a definitive scientific consensus has been challenging, partly because MND, unlike infectious diseases like COVID-19, is not a reportable disease, preventing the creation of a comprehensive national database of cases.
Danson, currently the Chair of MND Australia, welcomes the research exploring the area where his father and his football teammates were affected.
‘This information will contribute to a greater understanding of environmental and lifestyle triggers in MND,’ he stated.
‘MND Australia is supportive of the surveillance project that Macquarie University is currently undertaking to identify potential MND hotspots in the Riverina region.’
The organization has also reiterated its call for a more unified national approach to tracking and identifying motor neurone disease cases.
‘As part of our 2025 election platform, MND Australia has identified a critical need to build and manage a national Motor Neurone Disease Insights Platform,’ Danson explained.
‘This would bring together existing MND datasets across Australia and assist in identifying potential environmental and lifestyle causes of MND. It would also help to improve the quality of life for those living with MND and accelerate the path to a cure. This ask would cost the government $12million over four years’.
Hope for Future Research and Prevention
For Belinda, who notes local awareness of the Riverina as a possible MND hotspot, the research offers hope to other families impacted by the devastating disease.
‘It would, of course, be interesting if a definite link was found which applied to dad and his work in this area,’ she acknowledged.
‘Though I don’t find myself now in a position of trying to understand it or needing an explanation. I feel this research is more important for those moving forward, as nothing is going to bring dad back to us.
‘The biggest hope, I believe, to come out of the investigation is to find a cause, because if that can be found, then it opens up the potential for prevention or perhaps treatment, which would be the best possible outcome.’
‘For dad, and anyone who gets MND and their families, to receive a diagnosis with no known reason and no hope is the worst,’ Belinda added.
‘You are basically told that the rest of your life will be spent watching yourself waste away and the ones you care for most having to witness it.
‘There is no hope. No explanation, “only torture” as dad would explain it.
‘It must be one of the worst possible diagnoses out there so if the outcomes of this research, at the very least, can give people some hope, then that is wonderful.
‘And at best, it will help stop the devastation it creates in the lives of individuals and families.’