31/05/2026
💙 The world lost a great man this week🧊
Like so many Australians, I admired Neale Daniher not only for his courage in the face of Motor Neurone Disease (MND), but for the way he transformed his diagnosis into a movement of hope, awareness & action.
I was fortunate enough to interview him back in 2018 when I took part in the Big Freeze Newcastle, sliding 3 stories from the Newcastle grandstand into an icy pool to help raise awareness & much-needed funds for MND research.
I vividly remember standing at the top of the slide, waiting my turn. The Mayor was in front of me & casually asked whether I had been training for the plunge, explaining how the shock of the icy water can temporarily take your breath & make your heart feel like it’s stopped…
It was at that exact moment I realised I had, in fact, not read the fine print.
Suddenly it made perfect sense why the event safety team had asked which side of the pool I’d like to be retrieved from. Apparently “I’ll just gracefully step out” was not the correct answer.
Spoiler alert: I did not gracefully step out❄️
But that brief moment of shock & discomfort is nothing compared to what people living with MND face every single day- their minds & body…
Motor Neurone Disease is a progressive neurological disease that damages the nerves controlling movement. Over time, people lose the ability to walk, speak, swallow and eventually breathe independently, while their mind often remains completely intact.
It’s a cruel disease with no known cure.
Yet through Neale’s determination, humour & relentless advocacy, millions of dollars have been raised for research, support services and hope for families affected by MND.
💙 If you’d like to honour Neale’s legacy:
âś… Donate to MND research
âś… Support local MND organisations
âś… Volunteer at fundraising events
âś… Take the plunge in your local Big Freeze event
âś… Help spread awareness of this devastating disease
Neale often reminded us to “Fight MND.”
What an extraordinary legacy to leave behind.
Rest easy, Neale. Thank you for showing Australia what courage, resilience and hope truly look like.💙❄️💙
If you’d like to learn more or get involved with the Big Freeze and FightMND:
đź”— Big Freeze: https://www.bigfreeze.com.au
đź”— FightMND: https://fightmnd.org.au
https://issuu.com/newcastleweekly/docs/nw20181206_issuu/70?ff
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