Neale Daniher to step back from FightMND Foundation to focus on own motor neurone disease battle

DURING a string of TV appearances this week, Neale Daniher has issued a familiar footy phrase — he would play on as long as he could. The reality is Monday will likely be the last time he will be front and centre for the fundraiser he co-founded.

Bill Guest and Neale Daniher enjoy a beer as they discuss FightMND. Picture: Josie Hayden

NEALE Daniher doesn’t kid himself.

By the time scientists find a cure for motor neurone disease he won’t be around to see it.

It’s hardly a predicament worth smiling about, but it’s never really stopped him.

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During a string of television appearances this week, the former Melbourne coach issued his trademark grin and a familiar footy phrase to sum it all up — he would play on as long as he could.

For if there was one thing that MND can’t steal, it’s his attitude.

“You choose your own way,” he said.

“And my attitude is don’t give up, don’t give in. It can’t take that from you.”

Bill Guest and Neale Daniher enjoy a beer as they discuss FightMND. Picture: Josie Hayden

The reality is Monday’s Big Freeze 4 will likely be the last time Daniher will be front and centre for the fundraiser he co-founded.

If he’s still here this time next year, the condition will have stripped him of all speech, just as it will make its cruel advance within the bodies of more than 2000 other people around Australia.

Four years since he was diagnosed, his tireless campaign will be picked up and carried forward by thousands of supporters who have joined the fight.

Former Melbourne Football Club board member Bill Guest said that would be his mate’s greatest legacy.

The pair shared a beer in Daniher’s backyard this week, posing for yet another photo shoot as they reflected on how far the campaign had come.

Neale Daniher did the television rounds this week, including on AFL360.

They first met when Daniher was interviewed for the role of coach in 1997, but in recent months Guest has become a voice for the cause and for a friend who finds it increasingly difficult to speak.

“What we are all conscious of is the fact that Neale’s health isn’t great and it will get to a point where he won’t be able to help as openly and physically as he is now,” Guest said.

“Neale will always be on this journey, somehow with us, but we are left here with me as chairman and Neale’s family, to take that journey forward.

“It won’t stop when Neale stops — we want to keep the ­organisation sustainable and we want to find a bloody cure.”

Guest said Daniher’s story wasn’t just about the plight of sufferers and others like him, it was about the willingness of an entire community to pitch in and make a difference.

Neale Daniher launched the Big Freeze 4 campaign last month with his family, Ben, Jan, Lauren and Bec. Picture: Alex Coppel

The charity was created by Daniher and fellow sufferers Dr Ian Davis and former elite tennis player Angie Cunningham, who figured Melbourne’s passion for football could be a great mechanism to raise awareness and much needed cash for a condition.

The hope was to raise a couple of hundred thousand dollars.

“It’s extraordinary to think about now,” Guest said.

“Here we are four years later having secured more than $30 million.”

While several other MND organisations primarily focus on care, FightMND has invested its funds into research.

Almost $6.6 million was set aside for clinical trials, $6.8 million for drug development, $2.5 million for care equipment and $4.5 million for a world-first drug screening project.

Essendon players present a cheque to Neale Daniher this week. Picture: Michael Dodge/Getty Images

“It’s gone from three blokes having a beer to an organisation with a strong board and good governance,” Guest said.

“It’s all about us being sustainable and continuing the good work Neale has started.”

Daniher has never been comfortable with the kind of adjectives that get bandied about when talking about his achievements.

He doesn’t think of himself as brave, gutsy or courageous and he reckons it’s time the story moved beyond him.

“I have got through this year — just,” Daniher said.

“This time next year I can’t carry the foundation, so now it’s time to change the dialogue — I don’t want it to be about ‘poor old courageous Neale’ any more.

“We now need to plant the seeds for this thing to ensure the movement continues.”

The tangible achievements from the talented men and women in white lab coats were far more worthy, he said.

Each day they edge closer to solving the complex medical riddle.

Former coach Neale Daniher returned to Melbourne this week. Picture: Michael Klein

Two years ago, the ugly beast claimed his friend and colleague Angie.

Already ­unable to talk, fellow founder Ian Davis can no longer type.

About 800 Australians die from the disease each year and another 800 will be diagnosed.

It is Daniher’s desire that with continued funds, researchers can chip away at those bleak figures.

“Who knows how long it will take?” he said.

“It could well be that the work we are doing now will be of huge advantage to the next generation.

“That’s something to be proud of.”

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