When Peter Riley was diagnosed with motor neurone disease, he wanted to make it mandatory for doctors to report cases to health authorities, in the hope it would give scientists access to better data.
This week, several years after Mr Riley started his campaign, NSW Health Minister Ryan Park announced that NSW Health would make MND - an incurable and ultimately fatal neurological condition - a notifiable disease. Mr Riley, who spent the first 40 years of his life in Oak Flats, did not live to see his wishes realised: he died of MND in February 2023, at the age of 65.
But his daughter Erin said her father would be "over the moon". So passionate was her father about the cause, that Ms Riley said he wanted to have then-health minister Brad Hazzard come and speak to him while he was in hospital in the last week of his life. "So literally in his final days, he was still talking about this and how much it mattered," she said.
A petition he started attracted more than 20,000 signatures.
Mr Riley was a scientist himself, and he believed that having comprehensive data of who had MND - and where - would help researchers pinpoint possible causes and triggers of the condition.
"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," Mr Riley told the Mercury in 2022.
Ms Riley said on Wednesday that it was already recognised that MND was not evenly distributed and there was a high likelihood that environmental factors were involved.
"What making it notifiable will do is allow researchers to identify emerging clusters and also identify patterns that could point to what those environmental triggers could be," Ms Riley
"So it could mean a better understanding of what causes MND and hopefully treatments for it."
Ms Riley said her family was "thrilled" with the news that MND would become a notifiable condition.
"We're also a little bit sad that Dad isn't here to see it," she said.
"He put so much time and effort and care into campaigning for this."
After Mr Riley's death, his family, particularly his wife Beth, continued his advocacy for change and contacted politicians including Mr Park, their local MP for Wollondilly, Judy Hannan, and Murray MP Helen Dalton, whose electorate includes much of the Riverina, where rates of MND are much higher than the national average.
Ms Dalton introduced a bill to parliament in 2025 which proposed an amendment to the Public Health Act to make MND notifiable.
Ms Riley and Mr Park both recognised Ms Dalton's work on the issue.
"This is a disease with no cure," Mr Park said in parliament on June 24.
"It's a disease that we yet don't really understand everything about, and it's a disease that has catastrophic impacts on the individual affected."
He said he hoped the reform would lead to a better understanding of MND, which he referred to as a "beast of a disease".
"Over the next few weeks, we will be working with medical practitioners to make sure they're aware of what they need to do in relation to the notifying of this condition," Mr Park said.
It is expected the change will come into effect in about a month.
Mr Park, the member for Keira, acknowledged the work of the late Professor Justin Yerbury, a molecular biologist and former Illawarra Hawks basketball who devoted his post-sporting career to unravelling the complexities of MND.
MND claimed the lives of several of Professor Yerbury's family members, including his mother and his sister, and he died from the disease himself in 2023 at the age of 49.
In parliament, Mr Park also highlighted the work of neurologist Professor Dominic Rowe, who treated Mr Riley and researches MND.
The minister also paid tribute to the late Neale Daniher, the former AFL player turned MND campaigner who died in May at 65, 13 years after he was diagnosed with the illness.