The reason Peter Riley developed motor neurone disease, like 90 per cent of sufferers, is a mystery.
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
The 65-year-old from Razorback in south west Sydney was diagnosed with the form of MND known as ALS three years ago.
He thinks having lived in Oak Flats beside Lake Illawarra on the states south coast for the first 40 years of his life might hold the answer, but there is no way to unlock that without more data.
To that end Mr Riley wants MND made a notifiable disease, launching an online petition calling on NSW Health to make the change so it is mandatory for physicians to report cases of the illness to health authorities.
"That way there will be a comprehensive database of who has it, and where they live," Mr Riley said.
IN OTHER NEWS:
A scientist himself, Mr Riley said such data would help MND researchers in their quest to identify causes or triggers of the disease.
"It would be negligent of us to not try collect the data for Australia, and not give researchers the chance to look," he said.
"My hope is that by doing this, they'll be able to find even some little link, and that little link might be able to help them unwind what's happening chemically in your body."
He believes there might be a MND cluster among current and former residents of Oak Flats.
Mr Riley said research in other countries had shown a "pretty good" correlation between MND and proximity to bodies of water with blue-green algae.
"Some blue-green algae species have been shown to produce the toxin BMAA and have been linked to particular clusters of MND in Australia and overseas," Professor Justin Yerbury, a MND researcher at the Illawarra Health and Medical Research Institute, said.
"But evidence that unequivocally demonstrates that the exposure to blue-green algae causes has been lacking. So at the moment, the evidence is circumstantial."
Mr Riley and wife Beth know of multiple people who live, or have lived, in Oak Flats and have had MND.
Albion Park Rail resident Rob Thomas, 39, grew up in Oak Flats too, and he was diagnosed with MND 12 months ago.
Mr Thomas and his wife Trina are supportive of the push to make MND notifiable.
"I agree 110 per cent, there's not enough research, at all," Mrs Thomas said.
"It's got to be a good thing," Mr Thomas added.
He said not knowing the cause of his illness was frustrating.
Mr Riley's petition was inspired by neurologist Professor Dominic Rowe, who himself has been trying to get MND listed as a notifiable disease.
Professor Yerbury also supports the idea.
"Given that 40 per cent of the risk of getting MND is likely to come from environmental factors it would make sense to collect as much data as possible," Professor Yerbury said.
"So I do agree that it would be useful to have MND listed as a notifiable disease."
More than 16,700 others have also shown their support by signing Mr Riley's petition.
"I was elated to get to 1000, ecstatic to get to 5000, and the rest of it's just been beyond any expectation," he said.
When asked whether NSW Health would make MND notifiable, a spokesperson said most notifiable conditions were infectious diseases with a "clearly defined public health response".
The spokesperson said NSW Health was committed to better understanding the causes of MND, including monitoring the rate and distribution of cases through hospital admission and mortality data.
"These data may be provided to researchers, subject to approval of a research ethics committee and the Australian Coordinating Registry," the spokesperson said.
The spokesperson said any research that used the identifiable health information would generally need the informed consent of participants.
But Mr Riley said the information gathered by making MND a notifiable condition could be "totally confidential" and besides, the availability of more information on the disease trumped privacy concerns for sufferers.
"I for one can say, once you find out you've got MND and see what life's got for you... you're not going to care too much about your privacy," he said.
Mr Riley pointed out there were other, non-communicable diseases on the list,
The spokesperson also said MND was a rare condition, affecting eight in every 100,000 people in Australia.
But Professor Yerbury said the prevalence statistics were "deceiving".
"This is because the prognosis is so poor," Professor Yerbury said.
"It is probably more telling to think it in terms of lifetime risk which can be as high as one in 300.
"This means that of all the people alive in the Illawarra today 1000 will get MND."
Mr Riley accepts the approaching end of his life but does not temper the "horrible" nature of MND and its effects.
"[Death's] not a worry for me because I'm a Christian and have faith in Jesus Christ and know after death... I can spend eternity with him," he said.
"But it doesn't make the ride any easier."
What is motor neurone disease?
Motor neurone disease refers to several life-shortening, incurable diseases that affect nerve cells called motor neurons.
These cells carry messages from the brain to the muscles, which allow people to walk, talk, swallow, breath and make other movements.
In people with MND the motor neurons get damaged and die, causing the muscles to weaken and waste away.
"The best way I can think about it is that it attacks the wiring system of your body," Peter Riley, who had MND, said.
Eventually, Mr Riley said, the diaphragm could no longer support breathing and the person would die.
"If you live long enough, you become... an active brain inside a shell that can do nothing," Mr Riley said.
In about 90 per cent of cases, the cause is 'sporadic' or not known, while a genetic mutation is responsible for about 10 per cent.
MND researcher Professor Justin Yerbury said there was good research that showed about 60 per cent of the risk of developing the illness sporadically was related to an individual's mix of genes, and 40 per cent was related to environmental factors.
The most common type of MND is amyotrophic lateral sclerosis (ALS) which has a life expectancy of two to five years after diagnosis.
Advocacy organisation MND Australia says there are around 2100 people across the country living with MND at any one time.
Every day two people are diagnosed and two people die.