The announcement comes years after the research project stalled due to a lack of funding and has revived hopes for MND sufferers who say “it’s about time” the NSW Government listened.
Independent Member for Murray Helen Dalton has been fighting for the project to be relaunched since originally elected.
She confirmed on Thursday that $2 million had been secured from the state Labor government to fund “urgent research” into the connection between blue-green algae in waterways and high rates of MND in the region.
“This research should never have stopped,” Ms Dalton said.
“We are talking about people’s lives.”
Each year about 800 people in Australia are diagnosed with MND, a progressive neurological disease that attacks the nerve cells controlling muscles allowing movement, speech, swallowing and breathing.
NSW Riverina towns including Griffith, Wagga Wagga and Leeton have rates seven times the national average.
Ms Dalton, who has been “strongly advocating” for the funding for more than four years, said the funding will allow scientists from Macquarie University’s Centre for Motor Neurone Disease Research to recommence their “vital work”.
“Everyone knows somebody who's passed away here; it's terrible,” she said.
“If Sydney had seven times the rate of MND than the rest of Australia there would be an uproar and resources thrown at it.
“And if it does turn out to have blue-green algae as a contributing factor there would put the spotlight on water management.”
Only 10 per cent of MND cases are associated with genetic factors, with the remainder attributed to environment and lifestyle.
Most of the Riverina is affected by blue-green algae, or cyanobacteria, which produces a neurotoxin called BMAA and is one of the potential environmental triggers being investigated.
Professor Dominic Rowe, who is a leading neurologist at Macquarie University, has treated 1000 people with MND.
Many of those are from the Riverina.
Dr Rowe said the risk of dying from the disease is currently one-in-200. Thirty years ago, it was one-in-500.
“That can only be environmental,” he said.
“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.”
Because Griffith is an agricultural area, scientists are also investigating a link to chemicals such as herbicides, insecticides and metals in the water.
“We all need to know whether the high rates are being caused by blue green algae, or pesticides, or some other factor,” Mrs Dalton said.
“The people of Murray deserve answers and this funding for research will finally provide those answers.”
Ms Dalton is also strongly advocating for MND to be recognised as a notifiable disease, meaning it must be reported to relevant authorities.
“We can’t fix a problem we can’t see or quantify,” she said.
“This connection shouldn’t be a mystery and if we are going to address this problem, the first step is to understand the problem.”
Dr Rowe agreed it is “ridiculous” that MND is still not listed as a notifiable disease.
“At the moment, we don't know who has motor neurone disease and where they are,” he said.
“And until we know that, we can't unpick - in a scientific fashion - the epidemiology and the risk in the environment.”
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