By Melissa Blewitt

Motor neurone disease (MND) cases in Condobolin, Lake Cargelligo and across the Lachlan Shire will be formally recorded under a new NSW Government reporting requirement that makes the disease a notifiable condition.
MND is a rare and progressive neurological disease that causes the degeneration of nerve cells controlling voluntary muscle movement, affecting functions including walking, talking and breathing. There is currently no cure.
NSW is the first Australian jurisdiction to introduce mandatory notification of MND, with medical practitioners required to notify NSW Health of cases from 1 September following the publication of the Public Health Amendment (Motor Neurone Disease) Order 2026.
The change will allow NSW Health to build a more comprehensive picture of how many people are living with MND and where cases are occurring, providing data to support health-service planning and research into the disease.
The move has particular relevance to the Lachlan Shire, where Condobolin has had several known cases of MND and Lake Cargelligo has previously recorded an unusually high number of cases for a town of its size.
Lake Cargelligo GP Dr Khaled Bardawil raised concerns in 2020 about the number of MND cases in the town, which has a population of about 1,500.
Australian Institute of Health and Welfare data shows the number of annual MND deaths in Australia has more than tripled over the last few decades, rising from 238 in 1986 to 781 recorded deaths annually and that MND is now responsible for one in every 234 deaths nationwide. Ninety per cent of cases occur sporadically, without any apparent reason or family link.
This Australian-first initiative will provide NSW Health with a stronger evidence base to better understand motor neurone disease and may assist with the future planning of healthcare services and funding for research into its potential causes, and possible future treatment options.
Data collected will include the case’s full name, address, date of birth, age, gender, Aboriginality, language spoken at home, country of birth, occupation/school, date of onset, date of notification, and date of death if applicable. It will also include details about the referring doctor. The data collected will be kept confidential.
“It is estimated that 750 people are currently living with MND in NSW. This year, at least 300 people in NSW will be diagnosed with MND, and at least 300 people will die from MND,” Professor of Neurology, Macquarie University Dr Dominic Rowe AM revealed.
“Without understanding the cause, the ability to slow and stop MND remains a pipe dream, and people will continue to die rapidly.
“Identifying who has MND is the first step to understanding the cause of sporadic MND. The register will enable this. It will enable careful research into the environmental causes of MND, without which we will never understand the mechanisms involved.
“All people with MND want to be recognised. They want to be counted. They demand to be studied so that the cause of their disease is understood.”
Independent Member for Murray Helen Dalton said the commencement of mandatory notification was an historic moment.
“I have been advocating alongside Professor Dominic Rowe for seven years to make MND notifiable in NSW and to finally see it happen is a huge breakthrough,” she stated.
“For families in my electorate, this is deeply personal. We have seen alarmingly high rates of MND in parts of the Riverina and for years we have been asking the same question: why?
“We cannot begin to find the cause if we do not have the data. From tomorrow, for the first time, we can start building a clear picture of who is living with this cruel disease and where they are.
“This is a major global win but it is not the finish line.
“We need to make sure every person living with MND is captured so researchers have the information they need to investigate possible causes, improve treatments and, ultimately, help find a cure.”
The NSW Government committed $2 million funding for motor neurone disease research as part of the 2023-24 NSW Budget. This included awarding three research grants to help improve the wellbeing and health outcomes for people living with the disease, and drive advancements in diagnostic tools to improve rates of early detection and referral. These research projects are funded until late 2027, with progress reports due later this year.
“Motor Neurone Disease is devastating not only for those diagnosed, but for the family, friends and communities who surround them,´ Deputy Premier of NSW Prue Car explained.
“NSW is leading the country with a change that gives us the chance to properly assess the impact of this disease and use that knowledge to better support our healthcare services.
“This is about building better understanding today so we can work towards treatment options, and a step closer to a future with a potential cure.”
Now MND is a notifiable conditions, researchers will have an unprecedented opportunity to investigate this devastating disease.
“This is a practical step we are taking in the fight against motor neurone disease, and something advocates have been crying out for. Our hope is that by monitoring the disease, we might be able to understand it better,” NSW Minister for Health Ryan Park said.
“There is a reason people call motor neurone disease the beast – it is unrelenting and unforgiving, and it slowly takes away a lot of what people hold dear.
“We hope that by building this knowledge base, our incredible medical researchers and clinicians can do what they do best and develop preventive measures, better treatments, and maybe even a cure.
“We saw what former Australian of the Year Neale Daniher did in his remarkable life to fight against motor neurone disease, and we’re seeing what Jai Arrow is doing to combat it now – hopefully this small change can bring us one step closer to eliminating this awful disease.”