ANMF (Vic Branch) elected officials wear Big Freeze beanies while listening to Bec Daniher at the 2025 Delegates Conference. Photo: Christopher Hopkins
As Bec Daniher sat before hundreds of nurses and midwives on the final day of the 2025 ANMF (Vic Branch) Annual Delegates Conference, she paused for a moment, moved by what she saw.
A room filled with blue Fight MND beanies. A room filled with quiet solidarity.
‘It makes me a bit emotional,’ she said, scanning the crowd. ‘What you all do in your jobs is so incredibly important, and to take this moment to see you all wearing the beanies, it’s really beautiful.’
Emblematic of the ANMF ethos to support and uplift the most vulnerable, the sea of delegates and staff in blue beanies was reflective of both the organisation and members’ dedication to providing the best possible care to those who need it most.
In 2013, Bec’s dad, AFL legend Neale Daniher, was diagnosed with motor neurone disease. Bec was 22; a rowing champion at the ‘pinnacle’ of her career, having ‘just made the Australian team’; and a qualified accountant. Her life was full of promise.
Then came a quiet café meeting with her dad right before she was meant to travel to South Korea to represent Australia.
‘He told me he had received a diagnosis for MND. I had no idea what that meant,’ Bec recalled. ‘I jumped on Google, and read there will be a time where he wouldn’t be able to walk, he wouldn’t be able to eat. I haven’t heard him speak for about five or six years. The end of motor neurone disease is he will no longer be able to breathe.’
This disheartening reality was echoed by Neale’s doctors, with Bec recounting the ‘brutal advice’ that Neale and his family ‘tick off the bucket list’ as there was no real treatment they could provide.
But what Neale chose to do next reshaped the landscape of this disease in Australia. He fought back, not with medicine but with purpose. He launched Fight MND with Patrick Cunningham and Dr Ian Davis OAM – a national campaign that has since raised over $115 million for research, advocacy and care.
Reflecting on the decision to walk away from her previous career and become Fight MND’s first employee, Bec remembers it being the ‘easiest thing’ she has ever done.
‘[Dad] decided that regardless of what was told to him, he had an ability to fight back … he took that opportunity, [and] if someone with a terminal illness can find an opportunity, I thought: I can do that as well.’
‘It seemed quite unbelievable to me that we sent someone to the moon and there were no treatments and no cure for this illness.’
Nurses on the frontline
Speaking to a room filled with frontline health workers, Bec didn’t hold back about the challenges families and patients with MND face in the healthcare system.
‘There are no care guidelines for MND at the moment. We’re not equipping the healthcare system to be able to look after people who are experiencing MND,’ she said.
Noting that Fight MND has invested $2 million into developing clinical care guidelines (currently under way with the University of Adelaide’s Health Evidence, Synthesis, Recommendations and Impact team, alongside experts and individuals with lived experience of MND), Bec spoke to wanting to provide nurses with ‘the tools to look after [MND patients] appropriately.’
She acknowledged that MND is rare, unpredictable and consequently often unfamiliar to many working in health, but made one thing clear: compassion, patience and presence make all the difference.
‘Dad hasn’t spoken for five to six years. For [MND patients like him] to come into the healthcare system, there is extra anxiety and frustration to try and tell you what they’re going through. But I see it with dad: the beautiful care and support that he continues to be provided, and how it helps.’
Reaching regional communities
Over 200 of the delegates in the room had come from regional Victoria. For Bec, these communities hold deep personal meaning.
Dad’s from a tiny town in the Riverina called Ungarie,’ she said with a smile. ‘There’s even a giant Sherrin there now.’
Although Fight MND found great success in Melbourne with the Big Freeze campaign, they still needed a regional heart. That’s where The Daniher Drive was born, an initiative that sends the Fight MND team into regional and remote communities to raise awareness, fundraise and educate.
Bec acknowledged the incredible dedication and generosity of regional communities across Australia, highlighting the $500,000 raised recently in Bowral, NSW, and the $100,000 raised annually in Lake Grace, a remote town in Western Australia.
‘I think regional communities do such a fantastic job of coming together to support people. It’s been vital for us too, not to stay within the city, not to stay within Victoria, but to expand.’
But while the community spirit is strong, access to care often isn’t. That’s why Fight MND has started sending MND specialists into rural areas to support local health services and educate providers on how to care for people with MND.
‘We know that within the healthcare system, [nurses and midwives] decided upon this pathway with the best intentions to look after people, to support people, and to provide the best quality of care. From our angle, how we can support you in those endeavours is what’s really important at Fight MND.”
A legacy that belongs to many
Earlier this year, Neale Daniher was named 2025 Australian of the Year, a moment Bec described as humbling, surreal and beautiful.
‘I always put the Australians of the Year up on this pedestal. They’re absolutely amazing at what they do. So, it was very strange for dad’s name to be read out,’ she said.
Neale didn’t accept the award for himself, but ‘on behalf of the entire MND community and everyone who’s backed us from day dot.’
The award gave the Danihers a louder voice and a greater resolve.
The call to keep going
Speaking of her dad’s desire for a ‘world free of MND’, Bec said the Fight MND movement has always been about more than her family.
She highlighted the importance of pushing the boundaries of what’s thought possible in MND treatment and to ‘continue Neale’s legacy.’
For the nurses and midwives in the room, some of whom will be the first to support an MND patient and the last to say goodbye, that legacy is already in motion.
‘Hats off to those working in this space, because it must be so challenging. We want to support everyone as much as possible and continue to innovate.’
And in that moment, as more than 800 nurses and midwives sat shoulder to shoulder in their blue beanies, you could feel it. A room united by care, by courage and by the belief that no one fights this beast alone.
