AS A footballer, Neale Daniher had great hands.

Cruelly, those hands are now so weak and withered that the 55-year-old can no longer tie his shoelaces, cut a steak, dress himself or even put on a Cure For MND (Motor Neurone Disease) Foundation beanie without help.

But the much-loved former Essendon player and Melbourne coach continues to inspire the masses.

Daniher is selflessly fighting MND – the insidious killer he calls 'The Beast' – and is channelling all his energies into the second annual Big Freeze fundraising event before Monday's Melbourne-Collingwood game at the MCG.

Indeed, the man whose preaching of the Demons gospel earned him the nickname the 'Reverend', has become the 'Crusader'.

Daniher's selfless role in promoting the Cure for MND cause, as well as his outstanding football CV, saw him named as a Member of the Order of Australia in the Queen's Birthday honours list.

He was honoured for "significant service to community health through support for people with Motor Neurone Disease and their families, and to Australian rules football".

Time is ticking for Daniher, who has devoted himself to finding a cure for the insidious disease that progressively renders sufferers unable to move, speak, swallow and, ultimately, breathe.

The average life span for an MND sufferer from diagnosis is about three years – a milestone Daniher has just reached – and 90 per cent die within five years.

"When I was diagnosed in 2013, they basically told me, 'Sorry mate, there's nothing we can do for you,'" Daniher said.

"We're on the ropes and taking a hiding, but plenty of people are in our corner and eventually we're going to hit back.

"From hopelessness, now there's hope."

Daniher is buoyed by expert opinion that a cure will be found, and a recent breakthrough that identified a compound that freezes MND in mice.

"Now we need to move it from mice to men," he said.

The first Big Freeze event last year raised $2.5 million, but Daniher said MND research in Australia remained "woefully under-funded" and was yet to offer clinical trials.

Click here to donate to help the Cure for MND Foundation freeze MND and find a cure. All money raised goes towards vital MND research. 

"The medical cycle of identifying something and then bringing it to market will probably mean it’ll be too late for me," he said.

"But I live in hope, because the alternative is hopelessness, despair and darkness."

Daniher remains thankful for many things – among them the chance to make a difference, the overwhelming public support, and for the fact he can still walk unhindered.

"People probably won't notice too much difference since last year’s Big Freeze, but back then I was fully independent while now I depend on others," he said.

"But compared to a lot of other MND sufferers, I'm going OK. The disease is progressing relatively slowly. I'm going to be hard to kill."

Daniher has much to live for.

The father of four recently gave away eldest daughter Lauren at her wedding. He'd doubted he'd be around for such occasions.

"It was a very special, happy, emotional day," he said.

The former player, coach, assistant coach and football manager has also drawn on his vast footy and life experiences.

"Life never claims to be fair," he said.

"I was a 21-year-old captain of Essendon who had three knee reconstructions, so I learned early that there are no guarantees, even if you do all the right things.

"Life just gives you an opportunity and a handful of cards and it’s up to you how you play them. And if you get a bad hand, you still have to look for the opportunity.

"The outcome might not be good for me and other MND sufferers, but there's an opportunity to create awareness and hope."

Through it all, he hasn't lost the homespun Daniher sense of humour.

"With a terminal illness, you've got a choice: you can cry or laugh. And I know which one is more fun,” he said with a laugh.

This is an edited version of a story published in the round-12 edition of the AFL Record, available at all venues.