Neale Daniher brings world’s best brains in Melbourne to Fight MND

It has been just over a decade since AFL great Neale Daniher was diagnosed with the “beast” MND. He might be down, but he has not given up the fight for a cure.

Just over a decade on from his devastating motor neurone disease diagnosis AFL legend Neale Daniher remains positive, but accepts his health is deteriorating.

When asked how her father is going Rebecca Daniher says it is always a hard question to answer.

It has been four years since he was able to speak, but she says thanks to technology they get to talk every day.

“He’s such a positive, inspiring human, my dad,” she says. “(MND) is called the beast for a reason. It’s attacking his body, it’s not attacking his mind. He’s as sharp as ever.

“But at the end of the day he was told he had 27 months and that is the normal narrative for so many people out there. So we are so lucky that he’s still here.”

The Big Freeze launch at Melbourne Town Hall in 2023 unveiled a mural of Neale Daniher by Vincent Fantauzzi. Picture: David Crosling

His mum Edna reminds the family to count their blessings, and they do.

Daniher, 63, is the face of MND in Australia and the charity he helped to co-found with the late Dr Ian Davis and friend Pat Cunningham who lost his wife Angie to MND in 2016.

Called FightMND it has since invested a staggering $97 million into MND research and care and is one of the largest independent funders of research globally.

In late August it will bring the world’s best MND minds to Melbourne for a unique roundtable. Leading international MND researchers, clinicians, scientists and people living with the disease will share their stories so that together they can target the four top barriers to a cure:

HETEROGENEITY: which is understanding the variability and genetics in a person’s disease;

BIOMARKERS: to develop a diagnostic test because there isn’t one now and also a way to measure how a disease is progressing;

CLASSIFICATION: to help guide patients to the right clinical trials;

UNDERSTANDING the fundamentals of the disease: to develop drugs to target MND.

Neale and Bec Daniher at this year’s FightMND Big Freeze 10 ahead of the AFL match between Collingwood and Melbourne at the MCG. Photo: Jonathan DiMaggio/Getty Images

MND is a nasty disease. It affects the nerves known as motor neurons that tell muscles what to do until gradually they stop functioning altogether.

More than 2300 Australians live with it, most succumb within three to five years and less than 10 per cent survive beyond a decade.

“When we set up FightMND we wanted to make waves and to challenge the way we thought about research,” Ms Daniher said. “This roundtable exemplifies this.”

She says she can’t imagine her father not being involved in the three-day invitation only event.

“Dad has always led from the front. This is an urgent problem and we want to find the answer as quickly as possible,” Ms Daniher says.

Neale Daniher with daughter Rebecca Daniher and Dr Bec Sheean in Melbourne this week. Picture: Jason Edwards

FightMND’s director of research Dr Bec Sheean says only a decade ago finding a cure for MND felt like climbing Mt Everest.

“Is it close? It’s hard to put a number on how far away we are but the level and quality of research, the momentum and the pace at which research is happening now has never been seen before.

“It gives us hope we are close. There’s definitely a number of potential treatments in the pipeline,” she said.

As to the impact of Daniher, Dr Sheean says it has been enormous.

A family effort. The Danihers in 2023: Back row – Terry, Colleen Bruest (sister), Neroli Daniher (sister), Anthony, Jan Front – Lauren Daniher (daughter) holding Grace, Neale, Bec, Ben (son). Picture: Jason Edwards

“The MND research community is incredibly grateful to have someone like Neale and the co-founders Ian Davis and Pat Cunningham who had that vision of setting a really ambitious target and goal. They’ve completely changed the landscape of research here in Australia and on the global scale.”

Ms Daniher will share her story at the roundtable and tell the audience that watching her dad go through MND is challenging.

“But what we’re doing at FightMND, for me, it’s me helping my dad and it’s a small way, but I feel like I’m on this journey with him,” she says.

“We’ve taken something that could have just been completely black and grim and horrible and we found a way to fight back to have a beautiful community supporting us, to stand at the MCG and see the sea of blue, to talk to people that have a similar experience with MND and see them feeling empowered that there is hope, that there’s going to be an answer to this beast in the future.

Bec and Neale Daniher: She says “we’ve taken something that could have just been completely black and grim and horrible and found a way to fight back. Source: Instagram

“We’ve been dealt some tricky hands, but when I think about what we’ve been able to be a part of in the last 10 years, I’m still smiling about it.”

The FightMND Roundtable will be held in Melbourne 27-30 August. Guest speakers include:

- Leading neurologist and geneticist Prof Ammar Al-Chalabi from King’s College London, UK

- An expert in disease fundamentals and leading neurologist Prof Kevin Talbot from Oxford University, UK

- MND expert Dr Lucie Bruijn (Novartis, UK and EU) who leads a biomarker development portfolio with Novartis

- Leading MND neurologist Prof Angela Genge from McGill University in Canada who is also a leader in clinical trial design and outcome measures

- Research director at ALS Canada Dr David Taylor who brings expertise of MND fundamentals and knowledge of the global research landscape