Neale Daniher’s diagnosis of motor neurone disease came with an expectancy he would have a little more than two years left to live on average.
Twelve years later, the AFL legend has united the nation in the fight against the debilitating condition, spearheading a campaign that has raised millions of dollars in research for a long-awaited cure.
Among the many accolades the sporting hero and coach has achieved over the years, he can add another to the long list: Australian of the Year.
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The 63-year-old was bestowed the honour at a ceremony in Canberra on Saturday night, receiving the award from Prime Minister Anthony Albanese.
He said through the decency and generosity of Australians, a movement had been created to help find a cure for MND.
“Our vision is simple: a world without MND. Some may call it a dream, but I don’t believe it is an impossible one,” he said upon accepting the award.
“This disease is not incurable. It is simply underfunded and misunderstood. With focus, funding and unwavering determination, we can change that.”
Daniher said his journey and battle against motor neurone disease could not have been done alone, and being awarded Australian of the Year was a way to thank people for their support.
“To everyone who has bought a beanie, donated a dollar or spread the world, thank you. You are proof that when Australians unite, nothing is impossible,” he said.
“I know that this nomination will help grow awareness for our cause so that together, as Australians, we can continue this fight against the beast and one day achieve our vision: a world without MND.”
Daniher played more than 80 games for Essendon between 1979 and 1990 in a career plagued by injuries, before he transitioned to coaching, leading Melbourne from 1998 to 2007.
But it was his diagnosis of MND in 2013 that led him to become a tireless campaigner for a cure for the disease, helping to set up the FightMND charity.
The organisation has helped to raise more than $100 million into research for the condition, with the charity’s Big Freeze fundraiser at the King’s Birthday AFL match becoming a leading fixture in the code’s calendar.
“When I was diagnosed back in 2013, there was a small, but dedicated research community, but we needed to build our capacity if we were serious about taking the fight to MND,” Daniher said.
“The highlight (of the campaign) for me is how we have steadily built our capacity, for without a dedicated and robust research community, we won’t get the breakthrough we are after.”
Daniher’s wife Jan said the family had been enormously proud of all of his advocacy.
“Neale has been so strong and resilient through, obviously, going through a really tough time,” she said.
“It’s not just about us, it’s about all the people that have supported us along the way, because without them, we wouldn’t be here today.”
National Australia Day Council chair John Foreman congratulated Daniher on his accomplishment.
“Neale’s dedication to changing the outcomes for people diagnosed with motor neurone disease while dealing with his own health is truly inspirational,” he said.
“His efforts today are giving people hope for tomorrow.”
© AAP