When Prof Dominic Rowe meets a new patient with motor neurone disease, he asks them about their relationship with the river.
“I’ve got a young builder that I look after in Tumut, who has severe motor neurone disease,” Rowe says.
“I asked him, ‘Did you spend much time in the Tumut river or the Murrumbidgee?’ And he said, ‘we just water skied every weekend.’”
As of April 2023, Rowe, who is a leading neurologist at Macquarie University, has treated 1,000 people with motor neurone disease (MND). Many are from the New South Wales Riverina region, a national hotspot for the disease. It’s also a national hotspot for blue-green algae.
Researchers believe the two are connected. But funding to investigate those potential linkages had stalled – until this week, when the NSW government announced $2m to support “urgent research” into the disproportionate rates of MND in the Riverina.
The independent MP for Murray, Helen Dalton, had been pushing for the funding. She says it will allow scientists from Macquarie University’s Centre for Motor Neurone Disease Research to recommence their “vital work”.
“This research should never have stopped,” Dalton said. “We are talking about people’s lives.”
“We all need to know whether the high rates are being caused by blue-green algae, or pesticides, or some other factor.”
Dalton says she hopes researchers will now be able to provide those answers.
A disease hotspot
Nine years ago, Rowe and another researcher, Gilles Guillemin, drove around the Riverina to collect urine samples from MND patients and samples of fish and water from Lake Wyangan, near Griffith.
Only 10% of MND cases are associated with genetic factors – the rest are attributed to environment and lifestyle. In the NSW towns of Griffith, Wagga Wagga and Leeton the rate of the disease is seven times the national average.
Tania Magoci was diagnosed with MND in 2011. She spent every weekend of her childhood at Lake Wyangan near her home town of Griffith, waterskiing, swimming and boating with her family.
“It was just normal,” she says. “There was this stream that we used to ride down on our bottoms through the rocks and into this pond thing, and it was always just slimy and gross. But we just didn’t care, we didn’t even think about it.”
Now she won’t allow either of her two children to go to the lake, even when they had school excursions. “I won’t even let my kids drink the town water,” she says.
MND is a terminal and rapidly progressing neurological disease that attacks the nerve cells controlling muscles allowing movement, speech, swallowing and, ultimately, breathing. Magoci knew it well – both her mother and grandfather died of the disease. So when the former hairdresser started dropping her scissors and hairdryer at work, she knew the likely prognosis.
Magoci founded a local support group for MND and lobbied to revive the research project. It is “about time” the government listened, she says.
“I had to contact Helen Dalton and just thank her,” she says. “Because before Helen, I was trying and trying and no one listened to me. If it wasn’t for Helen, this wouldn’t have gone through.”
A spokesperson for the NSW health minister says the government understands community concerns about the high rates of MND in Griffith, and will seek research proposals and allocate the $2m fund using a merit-based assessment.
‘The worst disease in medicine’
About 800 people are diagnosed with MND in Australia each year. The risk of dying from the disease, says Rowe, is currently one in 200. Thirty years ago, it was one in 500.
“That can only be environmental,” he says. “I look after 170 people with this wretched disease. The average age at onset is 56 and it kills you on average in 27 months from diagnosis.
“It is the worst disease in medicine. If this is environmental, it’s potentially preventable. If it’s preventable, then we should try to prevent it.”
A first step, he says would be listing MND as a notifiable disease, which would trigger epidemiological oversight.
“At the moment, patients ask me, ‘why did I get it?’ And I have to say, I don’t know,” he says.
“That is so unbelievably unsatisfactory. It is ridiculous.”
Magoci will be turning 45 this year. She calls herself one of the “lucky ones”.
“I can walk,” she says. “The only thing is my breathing, and my swallow sometimes – I go to hospital quite a bit because my food goes into my lungs. But in saying that, I still get up every day and I just keep going.”
The funding announcement has provided some hope – not just for her own prognosis, but for that of her children and other children in the Riverina.
“As a community with MND, we just know that every one of us dies, every one of us doesn’t have hope,” she says. “For us to be able to say what causes it, then maybe we can find a treatment.”
