NEALE DANIHER-Play on

Neale Daniher made his name as an AFL player and coach, but since his diagnosis with motor neurone disease six years ago, he has created a legacy. Still leading the fight to find a cure, Neale shares some hard-won wisdom with Susan Horsburgh.

- Susan Horsburgh

If you ask Neale Daniher about the bald, brutal reality of living with motor neurone disease (MND), you won’t hear him complain. Apparently he never does, and he’s not inclined to start now. When pressed, though, he describes it as a daily battle.

“You never totally accept it,” says the 58-year-old. “The voice is never far away, saying, ‘You’re f**ked, mate’. One minute you might be able to lift a fork, the next you can’t. You get a little cold and can’t cough, and you feel like you’re drowning.”

At this point, Neale can’t cradle his grandkids in his arms, can’t brush his teeth or sometimes even catch his breath. But this is what he can do: he can jiggle his legs to rock his newborn granddaughter to sleep on his lap; he can share a cracking bottle of red and some laughs with his wife and four kids; and he can raise millions of dollars to fight the incurable disease he has dubbed “The Beast”.

For Neale, it’s the second list that counts – and every day he chooses to dwell on the positive. “I didn’t choose MND,” he says. “My only choice is my attitude and how I deal with it.”

Neale has decided to dedicate the time he has left to finding a cure, and has won admirers all over the country with his courageous, tireless commitment. One of the AFL’s four famous Daniher brothers, Neale played for Essendon in the 1980s, and later coached Melbourne to a grand final – lending his voice to MND research has proved a gamechanger for the cause.

Charity begins at home

Since he co-founded FightMND in 2014, its fundraising tally has topped $40 million – fed by campaigns like the Big Freeze, which sends celebrities into icy water at the MCG every Queen’s Birthday weekend. This year the sale of beanies alone raised $3.2 million.