From AFL great to national hero: Neale Daniher’s journey battling MND
Australian of the Year, Neale Daniher with his mother Edna.
When Neale Daniher was diagnosed with motor neurone disease, his life expectancy dropped to less than three years. Twelve years later, the former AFL great is defying the odds and leading the charge against the disease.
Co-founder and patron of Fight MND, Neale has dedicated himself to raising awareness and funding research to find a cure for what he calls “a beast of a disease.”
This year, Ungarie’s beloved sporting hero was named Australian of the Year, honoured for his relentless determination and unwavering commitment to the fight against MND.
“The journey began for me in 2013 when I was diagnosed with motor neurone disease,” Neale said in accepting the award.
“It doesn’t discriminate. It robs you of your ability to move, speak, swallow, and eventually breathe. But it did something else too – it lit a fire within me, a determination to fight for those who are currently affected and those who will face it after me.
Neale is no stranger to challenge and adversity.
Growing up on a farm in remote NSW, the third of eleven children, Neale received a scholarship to St Patrick’s College in Goulburn, spending his high school years far from home.
In 1979, he was drafted to the Essendon Bombers and at age 20, was named the club’s youngest-ever captain.
“He had the world at his feet at 21, and then he did his knee, and then another knee, and then another and his career was over,” his brother Chris said.
“It’s been cruel to him. The world was his oyster, and then after those injuries he couldn’t really come back. He retired in ’82, and then, blow me down, his team won premierships in ‘84 and ‘85. Our biggest goal, as footballers, is a premiership. It’s everything. That was taken away from him, and he could have been really dirty on the world, but he wasn’t.”
Neale took up coaching, playing a key role as assistant coach in Essendon’s 1993 premiership victory, and then leading Melbourne for more than a decade.
“When he got diagnosed with MND at a young age, in his early 50’s, he didn’t give up – instead, he turned around and made the world a better place. To be a person with the strength, nous, and wit to do what he has done – we think he is very special,” Chris said.
“Back then, we had to look up MND and work out what it was – we didn’t have a clue. After a while, Neale decided he could either do a bucket list and start ticking things off, or he could fight. To be diagnosed with MND and to make it into a positive and make a real difference to people – that is a huge thing to do.”
In 2015, Fight MND launched the Big Freeze, an annual event at the MCG on the King’s birthday weekend. Each year, celebrities and athletes take a plunge into an ice bath to raise funds for MND research.
“The money raised just blows me away,” Chris said.
“We were sitting in the backyard, one day, and Neale said, ‘I’ll raise 100 million in ten years.’ And he did it. He had a vision and pushed hard, and that’s the type of person he is.”
Neale said the recognition of the award belonged to the entire MND community – the families, the carers, the researchers, the volunteers, all those at the FightMND foundation and MND state associations and the countless Australians who joined the fight.
“Together, we have built a movement. Since 2014, we have raised over $115 million for care and medical research, supported clinical trials across the country and developed new drugs that offer hope. More than that, we have shown people living with MND they are not alone,” he said.
“I hope to leave a legacy that says this: no matter the odds, no matter the diagnosis, we all have the power to choose to fight, to choose our attitude, to choose to smile and to choose to do something because the mark of a person isn’t what they say, it is what they do.”