Member for Murray, Helen Dalton’s historic breakthrough to establish a Motor Neurone Disease (MND) notification and surveillance framework has been described by the Gregory family as a huge step in trying to find a cure or prevention for this horrible disease.

“We have been raising funds through the Shag Gregory Memorial Poker Run for 27 years after my dad passed from MND, and I think we expected there to be more answers by now,” lifelong Hay resident, Jasmine Gregory told The Grazier.

“We really hope this surveillance framework helps find those answers, and we appreciate Ms Dalton fighting for us, as a community and region.”

New South Wales is poised to become the first jurisdiction in the world to establish an MND notification and surveillance framework.

It followed a seven-year campaign led by Independent Member for Murray Helen Dalton.

The statewide MND Register will require diagnoses to be formally notified and recorded.

It will create for the first time a system capable of tracking MND, identifying patterns and supporting research into this cruel disease.

The framework has been developed in consultation with Australia’s foremost MND Specialist, Professor Dominic Rowe AM from Macquarie University with the expert assistance of NSW Health and Parliamentary Counsel.

The campaign began after concerns were raised about unusually high rates of MND in parts of regional New South Wales, including communities within the Murray electorate.

“In some communities we are seeing rates of MND that simply cannot be ignored,” Ms Dalton said.

“Yet until now there has been no mechanism to systematically identify cases, monitor trends or investigate whether there are common factors linking them.

“You cannot solve a problem if you are not collecting the evidence.”

Professor Rowe said one of the biggest obstacles in research has been the absence of systematic surveillance data.

“Despite decades of research, we still know remarkably little about why most people develop MND,” Professor Rowe said.

“To the best of my knowledge, no jurisdiction anywhere in the world has established a legislative notification and surveillance framework for Motor Neurone Disease of this kind.

“That makes this a genuine world first.”

Ms Dalton paid tribute to Professor Rowe’s advocacy and said the proposed framework would allow NSW to move beyond simply counting deaths and begin building a much clearer picture of the disease.

“This is about giving researchers the tools they need to ask better questions and hopefully find better answers,” Ms Dalton said.

“We have mortality data.

“We have isolated research studies.

“What we have never had is a mechanism that allows us to consistently identify cases, track disease incidence and build a comprehensive picture across an entire population.

“This framework creates the foundation that has been missing.”

Professor Rowe also paid tribute to MND patients, carers, advocates and clinicians who had helped drive the campaign.

“This has never been about politics,” he said.

“It has been about giving families hope that we can better understand this disease and one day prevent others from suffering the same heartbreak.

“NSW now has the opportunity to lead the world in the way MND is monitored, researched and understood.

“Today is a major step forward in the global fight against MND.

This article appeared in The Riverine Grazier, 8 July 2026.
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