‘We all have the power to do anything’: How Neale Daniher hopes to advance the quest for MND cure

Australian of the Year Neale Daniher says there was “little hope” when he was diagnosed with MND in 2013 but a dramatic shift in research keeps inspiring him — and his proud family — to keep fighting “the Beast”.

Inspirational Australian of the Year Neale Daniher and his proud family have spoken of their joy at the “great honour” and hope it can help advance the quest for an MND cure.

Fight MND crusader Daniher has helped raise more than $115m to fight the deadly disease he dubbed “The Beast” after being diagnosed in 2013, reshaping research and transforming care for those suffering the cruel condition.

His announcement as Australian of the Year last month was warmly received by the public nationwide, including a packed centre court crowd at the Australian Open, who gave him a rousing standing ovation before the men’s final.

Australian of the Year Neale Daniher at home with his wife, Jan, and children Ben, Lauren and Bec.

In his first major interview since the award, conducted through use of eye gaze technology, which gave the former footy hero a voice despite the disease robbing him of speech, Daniher summed up the sentiment of the honour in his own words.

“When I was first diagnosed we had little hope,’’ he said.

“Very few people in the general public even knew what MND was.

“Over the last ten years we have progressed so far … there is still much to do but we know we are getting closer in our fight against this beast of a disease.’’

The interview, run in full below, sums up Daniher’s typical fighting qualities, modesty and refusal to let the cruel hand he has been dealt dampen his spirit or bright outlook on life.

“I am actually blown away with the positive response from the general public to my fight.

“It is so encouraging and in turn inspires me to keep going.’’

Neale Daniher, with Prime Minister Anthony Albanese, accepts his Australian of the Year award. Picture: Martin Ollman

Just completing this interview was an effort for the former Essendon star and Melbourne coach, with the technology tracking his eye movement on screen and allowing him to use it to type as he looks at letters or words.

It is an arduous process for a man whose life was largely lived knowing most people listened when he spoke, taking minutes rather than seconds to type.

Despite the time factor, the technology has revolutionised communication for non-verbal people and Daniher’s wife Jan said her courageous husband was thankful to be able to share his gratitude for the award.

As they prepare for the 11th instalment of Big Freeze at the ’G — by far Fight MND’s biggest annual fundraiser — Mrs Daniher said Australian of the Year honours had given her family reason to reflect on the past 11 years of “a remarkable journey’’.

Daniher with his wife, Jan. Picture: Martin Ollman

“From the devastation of Neale’s terminal illness diagnosis of MND,’’ she said.

“To watching him struggle each day as the disease progresses.

“I’ve watched his resilience, his determination to continue to fight, to raise awareness and funds for MND research.

“Then the Australian community came on board and now we fight this disease together.

“These 11 years have now included Neale being named Australian of the Year from a group of truly inspirational nominees.

“What an honour and our family is incredibly grateful and massively proud.”

While some suggest 2019 Victorian of the Year Daniher’s Australian of the Year gong was a long time coming, attention has now turned to how he can be celebrated publicly.

Daniher with tennis legend John Newcombe. Picture: Michael Klein

One suggestion was painting his image on the Richmond silos below the iconic Nylex clock.

Regardless of how he is feted, daughter Bec Daniher was: “So incredibly proud of dad and all he has achieved.

“What started with Dad sharing his MND diagnosis has sparked a powerful movement — one that will change lives and rewrite the future of MND forever.’’

Bec, the campaign director at FightMND, said: “We are so thankful for the generous support of the Australian community — we wouldn’t be here without them hearing the call for help and rallying beside us.

“This journey has not been an easy one, but seeing the dramatic shift in MND research and the hope that this brings continues to light a fire within us to keep up the fight.”

Neale, pictured with Jan, says the fight has given him ‘great meaning and purpose’ in his life.

Neale Daniher’s inspiring fight

1: Now you’ve had time to let the dust settle on the announcement, how does it

feel to be named Australian of the Year?

Neale Daniher: “It is a strange, surreal feeling actually.

“I suspect no one grows up dreaming one day I will be Australian of the Year.

“Well, I didn’t anyway.

“It’s definitely not why I do what I do but saying that it has been a wonderful surprise and great honour for myself and my family.

“Joining such a wonderful group of Australians who have made amazing impacts in their chosen fields is a great honour and I’m motivated to continue that tradition.’’

2. What do you think your dad Jim would say, from the farm in Ungarie, if he was

alive to see one of his sons named Australian of the Year?

Neale Daniher: “Well, I am sure inwardly he would be very proud.

“Keeping with his old school ways, any praise would be understated.

“My Dad just wanted to give us opportunity and in return he wanted us to have a crack at life.

“Praise was a rare thing but neither was he critical.

“He might smile at me and say something like ‘well, there you go!’

Daniher says it’s a ‘strange, surreal feeling’ to be named Australian of the Year. Picture: Martin Ollman

3. You’ve been on plenty of big stages in your life but what went through your

mind when you were standing on centre court on Australia Day, with the

crowd giving you a standing ovation before the men’s Australian Open final?

Neale Daniher: “Well, that was very special.

“I am actually blown away with the positive response from the general public to my fight.

“It is so encouraging and in turn inspires me to keep going.’’

4. What do you hope this award does for FightMND and your crusade to find a

cure for “The Beast”?

Neale Daniher: “Since 2014 we have been calling on people to join our army to fight this beast of a disease and this honour just gives us a bigger, more national platform to broadcast our appeal.

“It also provides a terrific platform to promote and thank everyone across Australia that has supported our cause because without them we achieve nothing.’’

5. It would have been easy for you to throw in the towel years ago and feel sorry

for yourself. What continues to inspire you to fight and to continue this cause

for others?

Neale Daniher: “The fight has given me great meaning and purpose in my life.

“Not only for me but also for my family.

“It allows us to focus on doing something positive rather than thinking about ‘poor old me’.

“I am also encouraged by the incredible support we get from people all over Australia, they have been fantastic.’’

Daniher says he when he was first diagnosed there was ‘very little hope’. Picture: Getty Images

6. After winning the award you said in a statement that being diagnosed with MND ‘lit a fire in you” to help find a cure. How bright does that fire still burn despite your health

battle, given your diagnosis came way back in 2013?

Neale Daniher: “More than ever.

“When I was first diagnosed we had little hope.

“Very few people in the general public even knew what MND was.

“Over the last ten years we have progressed so far.

“We have built great public awareness, brought clinical trials to Australia, funded drug developments and helped build a vibrant MND research community.

“However, there is still much to do but we know we are getting closer in our fight against this beast of a disease.’’

7. What do you hope your legacy will be?

Neale Daniher: “In my lifetime, I hope we find the underlying causes of MND, better treatments, and, ultimately, a cure.

“But beyond that, 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’s what they do.’’

Go to FightMND.org.au to donate to Neale’s cause.

Originally published as ‘We all have the power to do anything’: How Neale Daniher hopes to advance the quest for MND cure