On Sunday Macquarie University Professor of Neurology Dominic Rowe and Professor Gilles Guillemin were in Griffith as part of research being carried out into whether a "cluster" of MND exists in the Riverina. While in the region, the experts who are part of a 30-strong research group working to find a cure for the debilitating disease met with patients from Griffith, Lake Cargelligo, Leeton and Wagga.

They collected blood, hair and urine samples to take back to Sydney for testing.

Prof Rowe said a dramatic increase in the number of deaths from MND over the past 25 years was the basis for their work.

“We’ve been here visiting patients because the Riverina seems to have a disproportionate number of people with MND,” he said.

“In 1986, one in 500 deaths in Australia was caused by MND, in 2011 it was one in 180,

so that’s a dramatic increase,” he said.

“We don’t know why. A lot of research has been done in genetic forms, but those only count for 10 per cent, so 90 per cent is sporadic. Nothing happens for no reason. If blue-green algae is a trigger we need to know what happens.”

Prof Rowe said exposure to blue-green algae was just one theory they were chasing.

He said blue-green algae or cyanobacteria, most often associated with nutrient runoff in coastal waters, produces a neurotoxic amino acid called β-methylamino-L-alanine, or BMAA. 

“This is a theory that’s been around for 30 years. It has only been revitalised in the last couple because of the increase,” he said.

“BMAA was originally identified in Guam after the indigenous people – the Chamorros – were found to suffer motor neurone disease up to 100 times more often than anywhere else in the world.

“The Chamorros used seeds from cycad palms to make flour, and regularly ate fruit bats,

which also ate the seeds. They both contained BMAA.

“We have two other clusters we are looking at-one in the Hunter Valley and one up around the Laurieton area.

Prof Rowe said it was also worth noting that in 2011, 780 Australians died from MND, just 20 shy of the 800 who died that same year on national roads.

Barry Lucas, who was diagnosed with MND two years ago, came across from Wagga on Sunday to take part in the study.

“I went down to Sydney for a neck operation two years ago and the doctor said ‘by the way you’ve got MND’,” he said.

“It was a real boot in the guts. But I’m managing it at the moment. I have my good days

and my bad. I was all for helping Prof Rowe. The findings are not going to help me, but it might help someone else down the track.”

Griffith and Region MND Information and Support Group president Wendy Simpkin said she was gob-smacked to hear the statistics.

“I was just as amazed as everyone else,” she said.

“When Prof Rowe mentioned the comparisons to the road toll it really struck me how common it is and that nothing gets done about it. That really frustrates me,” she said.

“More attention needs to be given to this. I really believe the government needs to do more.”