“Everyday I wake up and I think ‘maybe they’ll announce something today.’”

You can’t help but feel an immense sense of hope whenever listening to Neale Daniher speak about his battles with MND.

‘The Beast’, as Neale refers to the debilitating disease, has consumed his life in more ways than one.

Rather than lay down and be defeated, the 55-year old has dedicated nearly all of his time over the last three years to fighting MND, building his ‘Freeze Army’ along the way to help him.

This Monday is the centerpiece of the Freeze MND campaign.

At halftime during the annual Queen’s Birthday Clash between Melbourne and Collingwood there will be an ice bath of a different kind, as eleven of Neale’s influential friends go hurtling down a slide into a freezing pool of ice.

Aside from the entertainment this will provide (picture Kevin Sheedy dressed as Mrs.Doubtfire), it is just one of the many tools that Neale is using to raise much needed funds for the Cure For MND foundation.

The foundation’s aims are to raise money to help fund MND research, provide support to those suffering from MND and also to help raise awareness of the scale of the disease in Australia.

Importantly, thanks largely to the work that the foundation has done so far, a number of significant developments have been made in finding the elusive cure for MND.

“It’s a campaign for those about to be diagnosed, we want to give them hope,” Neale said late last week.

“The funding that came from last year’s ‘Freeze’ went to research and it’s great feedback for people who have donated to know that there have been breakthroughs.

“They’ve found a compound that can treat MND in mice. I like mice, but we want to save men and women. So obviously, there’s a bit more work to get the compound to a clinical trial.

“We need a lot more than what we’ve got at the moment as it’s still woefully underfunded.

“We’re very, very appreciative of what people have come out and done, but – unfortunately, it’s a costly exercise to find a treatment.

“We think that we’ll make a breakthrough…that gives us hope.”

Motor Neuron Disease is a rapidly progressing neurological disease that attacks the nerve cells which control muscle movement in the body, slowly breaking them down and essentially rendering a person a prisoner in their own body.

Shockingly, on average, once the disease is identified the sufferer usually only lives for another 14-months.

Neale is bucking that trend.

It is an extremely physically and emotionally taxing journey for not only the sufferer, but also for their families and friends.

The Daniher name is synonymous with Australian sport and in particular, AFL, with the four brothers all enjoying time playing during the 80s and 90s.

Family has been important for Neale along his journey so far, as they have bonded together to take up the fight with him.

“I can remember the day, I was at home with my brother and we got a call from Dad that something wasn’t quite right,” nephew Joe said.

“I obviously heard the news and for myself I didn’t quite know what that meant.

“I don’t think anyone in our family truly knew the circumstances that Neale was going to be facing, which was quite shocking.

“The first point of call was to do a little bit of research and find out what it meant.

“After that, we came together. It was a tough time.

“The lucky thing for us, is that we’re in a really big, strong family.

“That’s the lucky side of it.

“For Neale and his immediate family, it was about giving them some space but giving them as much support at the same time.

“There’s going to be ups and downs, but we’ve got a lot of people to look after him.”

Neale is well aware a cure is still many years off and is unlikely to benefit him in any way.

True to his selfless nature, Neale will continue to fight as long as he can so one day ‘The Beast’ is non-existent.

For now, Neale is focused on raising as much money and awareness as possible to help clinical trials get to the next stage, encouraging everyone to get involved in whatever way they can.

“We’d love for everybody to come to the party. This campaign is a call to action to the people, the grassroots people and the community.

“The politicians will follow but, if we can build the ‘Freeze Army’ - and they get behind us, well that’s the leadership we want. 

“Politicians can observe and, if they want to join, we’d love to have them on board.”

You can be a part of Neale’s Freeze Army by clicking here and donating to the Cure For MND foundation.