Medical practitioners are now required to notify NSW Health of MND cases following the publication of the Public Health Amendment (Motor Neurone Disease) Order 2026.
Ms Dalton has campaigned alongside leading MND specialist Professor Dominic Rowe AM for the notification system, driven in part by concerns about unusually high rates of MND in communities across the Riverina.
Under the new system, NSW Health will collect information including a person’s age, address, occupation, date of onset and other demographic and clinical information.
Ms Dalton said the commencement of mandatory notification was an historic moment.
“To finally see it happen is a huge breakthrough,” Ms Dalton said.
“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.
“For the first time, we can start building a clear picture of who is living with this cruel disease and where they are.”
Ms Dalton thanked NSW Minister for Health and Regional Health Ryan park for his support on this critical matter, but said the campaign has not yet reached its 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.,” Ms Dalton said.
Prof Rowe said this week’s launch means NSW is breaking new ground internationally.
“NSW is the first jurisdiction in the world to make MND a notifiable disease and Minister Park, Premier Chris Minns and Dr Kerry Chant are to be praised for this long overdue initiative, commenced many years ago by Dr Peter Riley,” Prof Rowe said.
“Dr Riley petitioned tirelessly while he suffered from MND to encourage the former NSW Government over many years. He grew up on the shores of Lake Illawarra, developed sporadic MND later in life and several of his classmates also developed MND.
“Identifying who has MND is the first step to understanding the cause of sporadic MND.
“The register 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.
“Without understanding the mechanisms of sporadic MND, we will never have therapies that dramatically slow or stop its progression.”
Ms Dalton said the immediate priority was ensuring the system captures not only newly diagnosed cases but the estimated 750 people already living with MND in NSW.
She said Prof Rowe and other MND experts must remain closely involved as NSW Health implements the system and determines how the data can best support surveillance and research.
About 90 per cent of MND cases occur sporadically, with no apparent family link or known cause.
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