People living in a vast rural region of an eastern state are four times more likely to have motor neurone disease than the global average but a new clinic is set to reverse the worrying trend.
Western NSW, especially the towns of Oberon and Walgett, recorded the highest incidents according to new research, with patients travelling hundreds of kilometres to seek life-saving care.
NSW became the first jurisdiction in the world to make MND notifiable, meaning medical professionals are now legally required to tell the government about cases.
Building on the steady momentum, Macquarie University on Monday launched its Brain Institute and Clinic to bring together researchers and clinicians who specialise in the disease.
MND Australia ambassador Jane Simpson, whose husband died from the "absolute bastard of a disease", said other Australian states needed to follow suit.
"Cause and cure is the holy grail but for the people who are living today with this disease, the change we need is to care better," she said.
"We'd really like to present to a hospital in an emergency with MND and not die...we'd like ambulances to know how to care for us in an emergency, and we really wouldn't mind some psychological support on how to live or die with this disease."
MND impacts parts of a person’s brain and neurons that control their muscles, leading to progressive weakness and eventual paralysis.
It can affect adults of any age and most cases are not genetic.
A paediatrician by training who also taught at Harvard's renowned medical school, Macquarie University vice-chancellor S.Bruce Dowton said the institute's mission was best summed up as "heal, learn, discover."
"It's about making an advance on dealing with the incredible devastation that neurodegenerative diseases cause in the lives of individuals," he said on Monday.
Macquarie University deputy vice chancellor Patrick McNeil said the purpose of the institute was to find treatments and deliver them to patients more quickly, he said.
“It typically takes an average of 17 years between when an important research discovery is made ... and when that is implemented in the clinic,” Dr McNeill told AAP.
“When you have integrated research and clinical institutions, that journey is shortened," he noted.
He emphasised that regional and rural clusters needed to be studied further to understand why the disease was more prevalent there.
Dominic Rowe, who heads up Macquarie’s Neurology Clinic, said 800 Australians would die from the disease this year.
"But I actually disagree with using the term die, motor neurone disease kills you," he said.
The facility will also do research and treatment around Parkinson's disease and dementia, including Alzheimer's disease building on recent breakthroughs in dementia treatment.
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