As a child, Tania Magoci spent every weekend at Lake Wyangan near Griffith, waterskiing, swimming and boating with her family.

She and her siblings would use the serpentine concrete outlet into the lake as a slippery slide. In summer, the slime from algal blooms exacerbated by the run-off from the nearby farms made it more fun to slide down the chicanes.

Tania grew up on one of those farms, where her family grew rice and wheat. Now she is questioning whether the conditions of that childhood accelerated her genetic predisposition for motor neurone disease (MND), a progressive disease which attacks the nerve cells controlling muscles allowing movement, speech, swallowing and, ultimately, breathing.

Only 10% of MND cases are associated with genetic factors while the remaining 90% are associated with environmental and lifestyle factors.

The numbers of sporadic (ie non-genetic) cases of MND have increased by 250% in the past 25 years in Australia. New South Wales towns including Griffith, Wagga Wagga and Leeton in the Riverina have rates seven times the national average. Coffs Harbour, Tamworth and Port Macquarie are other hotspots for the disease.

Scientists are investigating whether exposure to pesticides, metals and blue-green algae toxins increases the likelihood of contracting the disease. A recent study in the United States found certain pesticides could accelerate MND.

Blue-green algae on Lake Wyangan near Griffith, NSW. Photograph: Oliver Jacques

As the drought continues across Australia, heat and dwindling water supplies have accelerated the algal bloom, leaving rural residents concerned that their water supply could be potentially deadly. It is becoming an issue in the upcoming NSW election and potentially in the federal election.

“There are little clusters coming up down that river stream and it’s scaring me there’s going to be more clusters,” Magoci says.

Her grandfather died of the disease and her 58-year-old mother Karen died 10 months after her diagnosis. Magoci says her mother was told she would die and to go home as there was nothing they could do.

The experience, coupled with her own diagnosis, has driven her to become an Australian-style Erin Brokovich – the accidental environmental activist who led the fight against contaminated water in the small US town of Hinkley.

Magoci’s activism led her to Prof Dominic Rowe and Prof Gilles Guillemin at the Macquarie University Centre for Motor Neurone Disease Research. She started a support group for local sufferers of MND after helping her father care for her mother and has now helped 13 sufferers and 20 more who have passed away.

When the 40-year-old hairdresser started dropping her scissors, she went straight back to Rowe to be tested. Magoci stopped work when she could no longer hold the hairdryer.

Since her diagnosis, Magoci has been on a medical trial which requires a seven-hour trip to Sydney every three weeks to try to find a treatment that may help the people in her support group and potentially her own children, who are teenagers.

“One of our members, a beautiful girl, got diagnosed two weeks before me, she is still living but she can’t move any part of her body, she’s got two young kids same as me, she can’t talk, she can’t walk, she can’t move any part of her body,” Magoci says.

“I don’t mind going up every three weeks if I can find a treatment. I don’t even want a cure; if I can find a treatment, something for my kids to hang on too, I will try it.”

Tania Magoci’s motor neurone disease diagnosis has driven her to become an Australian-style Erin Brokovich. Photograph: Oliver Jacques

The Macquarie team created an MND biobank in 2012 to collect urine samples to screen and identify potential triggers from across the region, particularly from the families of MND sufferers.

But the scheme, which looks at the levels of potential environmental catalysts, has received no government support so Magoci is urging people in her area to donate samples.

Regional airlines cannot fly the samples, so Magoci drives them to Sydney because they have to be tested within 24 hours.

She is calling for $2m from the NSW government, less than the $3m in MND funding provided by the Victorian government.

Responsibility for water in rural areas is often split. In Griffith, State Water has control in the river system before it passes to private company Murrumbidgee Irrigiation (MI) which delivers the water closer to the town before Griffith city council takes control. Lake Wyangan is half managed by the council and MI.

NSW Shooters, Fishers Farmers candidate Helen Dalton, who is in contention for the state seat of Murray on a margin of 3%, is urging the government to support the project with $2m in funding.

“People have a basic right to get good quality water,” Dalton says.

However Dalton’s husband Nayce has just been appointed chair of MI, though she rejects any concerns over a conflict of interest.

“This is the state government’s responsibility, they should be pledging $2m but they don’t want to know because they don’t want to be sued. MI do not guarantee water quality, they are an infrastructure company, a water delivery company.”

Dalton says the algal blooms were happening in the wider region, including Menindee, Balranald and Hay.

“[The state government] are throwing money around like drunken sailors, so $2m should not be a lot in grand scheme of things.”

Austin Evans, the state Nationals MP for Murray, says he would support funding for research but he is not “in charge of the purse strings”. Evans also advocates funding to improve water quality in Lake Wyangan.

“The research element needs to be supported,” Evans says. “MI and the council need to look at ways to improve water quality and lessen the chance of blue-green algae.”

Griffith council did not return Guardian Australia’s calls but in February released a statement reassuring the local residents they were monitoring the water flow from the catchment area into the lake to determine how much sediment and nutrient runoff enters Lake Wyangan north.

The council says it also released 300 megalitres into the lake in January to ensure conditions did not create more algal blooms.

