Today’s the day. The Big Freeze returns to the MCG for round 12.
The slide is in place, the ice is on standby and the costumes are ready as Australia unites in the fight against the Beast that is motor neurone disease (MND).
This day exists because of three people who made a choice. A choice to make a difference. A choice to not sit quietly. A choice to fight. And at the centre of that story is Neale Daniher.
Through his leadership, FightMND has been able to invest in vital research and support programs for people affected by MND. It has transformed Australia’s MND research landscape and brought it to the world stage. But his legacy extends far beyond funding. It lives in the movement he built. And the people who continue it.
The fight against MND does not end with Neale. His signature rally cry, Play On, is louder now more than ever.
Let’s keep his legacy alive. Together we continue the fight, moving towards a future without MND. We Play On, for Neale.
Be a part of Big Freeze 12 and donate by grabbing a Digital Beanie
Every King’s Birthday the MCG turns into a sea of blue Beanies for the Big Freeze. Thousands of Australians coming together, united in the fight against the Beast that is MND.
But this fight isn’t limited to those inside the stadium. Whether you’re in the stands or watching from home, interstate or overseas, you can still be part of this fight.
The Digital Beanie is a new way to donate in the fight against MND.
This year, FightMND is aiming to sell over 100,000 Digital Beanies, enough to put a Digital Beanie on every seat of the MCG.
Every Digital Beanie sold helps FightMND fund vital research and care programs, bringing us one step closer to defeating the Beast for good. All Digital Beanie purchases are tax deductible.
Play On, for Neale. Donate by grabbing a Digital Beanie.
Every King’s Birthday weekend, something remarkable happens. Australians across the country pull on their Big Freeze Beanies and come together in support of those living with motor neurone disease (MND).
Big Freeze 12 marks another powerful chapter; shaped by the resilience and leadership of FightMND Co-founder and Patron Neale Daniher and carried forward by the community he inspired.
For more than a decade, Neale’s advocacy has helped transform the fight against MND, driving investment into groundbreaking research and programs that support those affected by the disease. What began as a bold idea has grown into a national movement.
While Neale will be deeply missed, the fight he led continues. His call to action, Play On, resonates stronger than ever.
This Big Freeze, we honour his legacy by coming together, raising awareness and supporting the work that will help create a future free from MND.
We Play On, for Neale.
State Freezes take the fight coast to coast
Big Freeze 12 is reaching communities across the country, with State Freeze events helping “freeze the nation” in support of the fight against MND.
The Queensland Freeze kicked things off last weekend, with Brisbane Lions supporters turning out in strong numbers to show their support for the cause. Thank you to everyone who attended on the day.
The Adelaide Crows will kick-start a big weekend as they bring the Chill on the Hill back for the SA Freeze on 4 June. The dunkee lineup features former AFL player and radio host Ryan Fitzgerald, Australian Diamonds squad member and Adelaide Thunderbird Matilda Garrett, 7News Adelaide presenter Mark “Soda” Soderstrom, cricket broadcaster and writer Bharat Sundaresan, and SA Health Minister Blair Boyer. It is shaping up to be an unforgettable evening.
We then head west on 6 June, as the West Coast Eagles host the WA Freeze at Optus Stadium. Triple M’s Katie Lamb has been revealed as the first dunkee, with more names to be announced soon via West Coast Eagles’ social channels.
From Brisbane to Adelaide and Perth, State Freezes continue to unite Australians behind one cause: a future free from MND.
King’s Birthday Eve: Honouring Neale’s legacy
As Big Freeze 12 activities unfold across the country, the King’s Birthday Eve clash between Essendon and Carlton provides a special opportunity to reflect on why the fight against MND matters.
A dedicated pre-game tribute will honour Neale Daniher’s extraordinary contribution to the MND community, celebrate his legacy and recognise the impact he has had on research and awareness.
It’s a moment to remember those affected by MND, acknowledge the progress achieved so far and recommit to the work still ahead.
Play On, for Neale
No matter where you are in Australia, or around the world, there are plenty of ways to support the fight against MND:
Watch it live: Tune in from 2:00pm AEST on Seven and 7plus Sport.
Join the Walk: Be part of the Zurich Walk to the ‘G from Federation Square.
Grab a Digital Beanie: Help FightMND fill the MCG with Digital Beanies this Big Freeze.
Wear your Big Freeze 12 Beanie:Show your support and wear it with pride.
Get social: Share your Big Freeze moments using #BigFreeze12.
What’s Happening on Big Freeze 12?
From the Zurich Walk to the ‘G to the iconic Big Freeze Slide and the King’s Birthday blockbuster between Collingwood and Melbourne here’s your guide to the day.
10:00am – Zurich Walk to the ‘G activities begin at Federation Square
12:15pm – Walk to the MCG commences
12:30pm – Public gates open at the MCG
2:00pm – The Big Freeze Slide takes centre stage as our Sliders take the icy plunge for MND awareness
3:15pm – Melbourne and Collingwood face off in the annual King’s Birthday clash
Can’t make it to the MCG? Catch all the Big Freeze 12 action live and free from 2:00pm AEST on Seven and 7plus Sport.
Walk with the Dees at the Zurich Walk to the ‘G
Start your King’s Birthday morning with the spirit of community at the Zurich Walk to the ‘G.
From 10:00am, Federation Square will come alive with entertainment, Q&As with Melbourne players past and present, kids’ activities, giveaways and activations, all in support of FightMND.
Pick up a Big Freeze Beanie, enjoy a snag at the Demon Army BBQ and soak up the atmosphere before thousands of supporters make their way to the MCG at 12:15pm.
It’s a family-friendly way to kick off Big Freeze Day, connect with the community and show your support for everyone impacted by MND.
For more information about the Zurich Walk to the ‘G, visit the Melbourne Demons website.
Play On, for Neale
This Big Freeze, we Play On, for Neale.
From State Freezes to King’s Birthday Eve to the Big Freeze at the ‘G, Australians are coming together for people living with MND. Every Beanie. Every donation. Every act of support continues the work started by Neale Daniher, Pat Cunningham and Dr Ian Davis.
Big Freeze 12 is a reminder that the fight doesn’t stop when the game ends. It continues every day. Through research, awareness and action.
Be part of it no matter where you are in the world. Donate by grabbing your Digital Beanie and help fight the Beast.
“A laser focus on getting to treatments faster”: Remembering Dr Ian Davis OAM
As one of FightMND’s co-founders, Dr Ian Davis OAM was passionate about the need to disrupt Australia’s motor neurone disease (MND) research landscape. To lift it onto the international stage.
On Ian’s birthday, 2 June, the FightMND team sat with Dr Bec Sheean, General Manager of Programs and Research to reflect on his legacy. A legacy that continues to shape the organisation’s approach to research and its determination to move faster for people living with MND.
When FightMND was established in 2014, Ian was helping to shape its direction with the urgency of someone who understood, in the most personal way, what was at stake. Diagnosed with MND at the age of 33, he brought to the organisation both deep medical expertise as a clinician and researcher, and a lived experience of the disease that sharpened every decision he made.
Ian died in 2018, but his influence has never left the organisation he helped build. His thinking, his standards, and his insistence on urgency continue to underpin the way FightMND approaches research today.
Reflecting on those early years, Bec remembers a man who was, in her words, “laser focused” on one thing above all else: changing what was possible for people living with MND, and doing it faster.
A clinician who refused to accept “nothing available”
Ian’s background in haematology at Melbourne’s Peter MacCallum Cancer Centre shaped the way he approached MND research. Having worked in cancer care, he was used to offering patients options; clinical trials, new therapies and pathways forward when first-line treatments failed.
That experience made the reality of living with MND particularly confronting.
“At the time there were no clinical trials in Australia and there weren’t any new potential treatments in the pipeline either,” Bec explains. “Coming from cancer, he had always been able to give people different treatment options.”
She recalls Ian describing it as a drawer you could open again and again. “If something doesn’t work, open the drawer and try something new, or enrol in trials. There were other options to go to.”
For Ian, that “drawer” simply didn’t exist in MND.
That gap became the foundation of FightMND’s research strategy. Building a pipeline of therapies, starting in the lab and pushing them as quickly as possible toward clinical trials in Australian patients.
Building a pipeline, not just funding projects
From the outset, Ian insisted that FightMND’s research funding needed to be sharply focused. It wasn’t enough to support good ideas. The work had to directly contribute to treatments reaching people faster.
Bec explains that this meant a constant discipline around scope and impact.
“We were only funding the best research and the research aligned with that priority outcome,” she says. “Giving people access to potential treatments.”
He was equally firm on avoiding duplication. In a research landscape where competition often drives parallel efforts, Ian pushed strongly for collaboration instead.
“He was really, really against duplication,” Bec says. “He was a strong advocate about MND researchers moving away from silos. He believed that the MND research community needed to collaborate if we’re going to beat this disease.”
That philosophy shaped FightMND’s grant process from the beginning, including a rigorous international review system using leading MND experts. It also helped ensure funding was directed into genuine gaps rather than overlapping work already underway elsewhere.
Opening doors globally
Ian’s reputation extended far beyond Australia. Even when illness prevented him from travelling, his influence opened doors internationally.
Bec remembers attending global MND conferences on his behalf and meeting leaders from major pharmaceutical companies.
“These are really big pharmaceutical companies, very busy people,” she says. “But the reason they would have a meeting with me was because of Ian.”
His credibility, knowledge and passion meant organisations were willing to engage, not just with FightMND, but with the vision he had helped articulate; bringing clinical trials to Australia and accelerating global collaboration.
A demanding, restless, brilliant leader
Day to day, Ian was relentless.
“He just worked around the clock,” Bec recalls. “I don’t think he ever really slept.”
His ability to move between disciplines was extraordinary. One moment he would be analysing scientific literature, and the next he would be shaping communications, building partnerships, or refining the organisation’s strategy.
“He could go from reading a scientific paper… to understanding how to turn research into an emotive communication piece, to building our website,” she says.
But alongside his intensity was a clear philosophy. Efficiency mattered because every dollar should serve research.
Outside his work ethic, Ian, along with Neale and Pat, believed in the importance of putting the FUN into fundraising.
“We had so many laughs, so many good times. We worked hard but we also celebrated the little wins along the way,” reflected Bec.
A legacy that still drives FightMND forward
Beyond his scientific impact, Ian is remembered as generous, intelligent, and deeply committed to purpose. He helped establish FightMND in 2014 after retiring from medicine due to his illness, serving as Chair and leading its scientific direction.
He also played a key role in creating the inaugural Australasian MND Symposium in 2018, bringing together more than 400 researchers and clinicians with a shared goal of advancing global collaboration.
For Bec, his legacy is still present in how FightMND operates today: strategic funding, global partnerships, and an unrelenting focus on treatments.
And while Australia is now recognised as a hub for MND research, something Ian helped build, she believes he would still be pushing for more.
“Knowing Ian,” she says, “he would be proud of what we had achieved, but I’m sure he would have some constructive feedback! He would be saying, nice work now onto the next goal.”
Together we Play ON
Ian, together with Neale Daniher and Pat Cunningham, believed that everyone could be part of the fight against the Beast that is MND. Not just researchers, clinicians, or those living with MND, but an entire community willing to come together to help beat it.
Their legacy lives on through FightMND and the Australians who chose to continue the fight against the Beast. Together, we Play On, for Neale, for Ian and for everyone affected by MND. Show your support. Donate by grabbing a Digital Beanie.
From backyards to the MCG: Dr Josh Saunders’ Big Freeze journey
For Creswick GP Dr Josh Saunders, the road to the MCG Big Freeze slide didn’t begin under stadium lights, but in the quiet chaos of family fundraising. A bag of ice, a backyard kiddie pool and a determination to do something meaningful in the fight against motor neurone disease (MND).
On 8 June, that journey reaches a new milestone as he becomes the first-ever Big Freeze Community Slider at the MCG, stepping onto one of Australian sport’s biggest stages during the King’s Birthday clash. His involvement carries a deeply personal connection to MND and a strong sense of respect for the legacy of Neale Daniher, whose leadership helped turn a once silent fight into a national movement.
“It feels wild,” Josh reflects.
“It is such an amazing privilege to get to be involved in this event. Particularly poignant given the week that we’ve had with Neale’s passing. The impact of his legacy has really hit home.”
A fight close to home
The fight against MND is deeply personal for Josh and his family.
“MND runs in the family. This cause means everything to us.”
As a GP, Josh said this year’s FightMND campaign resonated strongly with him, particularly its focus on how many MND journeys begin quietly, in consultation rooms and private conversations long before they become public battles.
“As the campaign states, the fight against MND started well before the G,” he said. “It was in the quiet of a doctor’s office, and as a GP that obviously really hits home.”
He said Neale Daniher’s greatest achievement was bringing visibility and urgency to those deeply personal moments experienced by patients and families across the country.
“Thinking about how Neale brought this outside and made it loud is just astounding,” he said. “How hard is it to get 90,000 people behind anything? His ability to rally communities around this cause is unbelievable.”
Years of grassroots fundraising
The Big Freeze slide is the latest chapter in years of hands-on fundraising by the Saunders family.
Over the past few years, they have taken part in ice bucket challenges, a Big Freeze 10 family slide, lemonade stalls at Apollo Bay, and participation in the Great Ocean Road Running Festival.
In a family affair, all these efforts are connected through Bumblebee for MND, a grassroots initiative led by Ken and Kim Edmonson, Josh’s wife Jacinda’s aunt and uncle, that has become a travelling symbol of community fundraising and awareness.
In January this year, Ken and Kim reached a major milestone, surpassing $100,000 raised for FightMND through their ongoing work across events, communities and regional Australia.
For Josh, those efforts reflect the heart of the movement.
“People are universally kind and good,” he said. “If you connect with people and connect with the cause, incredible things happen.”
Preparing for the Big Freeze
While sliding in front of a packed MCG might sound daunting, Josh has been preparing at home with the help of two very enthusiastic coaches; his children Raff and Theo.
“We’ve done a couple of training runs at home,” he laughed. “I have two experts with over 10 years’ combined playground experience who are coaching me through sliding techniques.”
The preparations have also included plenty of ice-bucket conditioning sessions, with the children taking their role as trainers very seriously.
As for what costume he will wear on the day, Josh is staying tight-lipped.
“The theme this year is someone who inspires you, which I think is hugely important considering this last week with Neale’s passing.
From backyard efforts to the MCG
The Saunders family’s journey with FightMND began simply, but has grown steadily through connection, community and persistence.
“Our first Big Freeze was a bag of ice from the servo and a kiddie pool in the backyard,” Josh explains. “From there it’s just grown.”
Now, from local lemonade stalls to marathon courses along the Great Ocean Road, and from grassroots fundraising to the MCG stage, that journey continues.
And on 8 June, as 90,000 fans look on, Josh will slide not just as a participant in a spectacle, but as part of a much larger movement shaped by Neale Daniher’s enduring legacy and carried forward by families, friends and communities across Australia who Play On, for Neale.
Play On, for Neale
As Josh takes his place on the Big Freeze slide, he represents the thousands of families, friends and supporters carrying Neale Daniher’s legacy forward. Neale showed Australia what was possible when people come together behind a cause, helping drive vital investment into MND research and programs supporting Australians affected by MND.
The fight does not end here. Neale’s rally cry is louder now than ever, calling on all of us to continue the work he started with Pat Cunningham and Dr Ian Davis. Play On, for Neale. Donate by grabbing a Digital Beanie or buy a Beanie to show your support.
“We’re heartbroken to share that our much-loved husband, Dad and Poppy, Neale Daniher, passed away at home, surrounded by his family.
From day one, Neale was a fighter. His determination was unmatched – choosing every day to find opportunity where others might see only challenge, and taking the fight to the Beast with everything he had.
Even in the toughest times, he kept pushing forward, determined to land as many blows as he could against his toughest opponent, all with a cheeky grin and a sharp sense of humour that never left him.
Long before MND, Neale had always been the heart of our family.
Growing up as one of eleven children, he brought light and laughter wherever he went.
He loved deeply and was loved just as much in return by his family and friends.
Across every part of his life, Neale left his mark.
Many knew him as “Coach” or “Reverend” during his time at the Dees, while at the Dons he was respected as a fierce and calculating player, with a brilliant football mind.
He was a natural leader, someone people were drawn to and looked up to.
But beyond all of that, he was a loving husband, dad, a proud Poppy, a music lover, and the one with the biggest laugh in the room.
He was known for his quick wit, his humour, and his ability to bring people together – qualities that defined him far more than any title ever could.
We want to thank the incredible community who stood beside Neale and our family throughout this journey.
Your support, kindness, and unwavering belief meant more than we could ever put into words. Neale drew great strength from knowing he was never alone, and neither were we.
We are so grateful to the incredible carers, nurses, doctors, researchers, and specialists who supported Neale and our family with such dedication and compassion. Thank you.
Neale’s fight was never his alone. It became something bigger – something shared – and it touched the lives of many.
His wish was simple but powerful – to help create a world where no one has to face this disease. But beyond that he wanted to leave a legacy that says this “No matter the odds, no matter the diagnosis, we all have the power to fight, to smile, and to do.
Because the mark of a person isn’t what they say, “it’s what they do”.
We will forever remember him for the lasting impact that he has made on us all. He has inspired, he has loved, he has lived and it would only be fitting to finish with his words – Play On.”
State Funeral Service for Neale Daniher
A State Funeral to honour the life of Neale Daniher AO will be held at 1:00pm on Wednesday 10 June at the MCG.
The Service will be open to the public and will be live streamed for those unable to attend.
For more information on the State Funeral Service, including how to attend or view the live stream, or how to leave a condolence message, please visit vic.gov.au/Neale-Daniher
Play On, for Neale
Neale Daniher. We will forever remember him as our inspiration. Our fighter. The Reverend.
His fight against motor neurone disease (MND) does not and will not end with Neale.
We march forward towards his vision of a world free from MND.
Australia’s first national MND Care Guideline move closer to reality
For thousands of Australians impacted by motor neurone disease (MND), the development of the nation’s first evidence-based MND Care Guideline represents more than a major healthcare milestone. It offers hope for consistent and informed care for people living with MND and those who support them.
Led by Professor Zachary Munn and his team at Adelaide University’s Health Evidence, Synthesis, Recommendations and Impact (HESRI) group, and supported by a $2 million FightMND Care Grant, the Project is working to address a critical gap in Australian healthcare – the absence of national, evidence-based guidance for MND care.
For too long, clinicians, people living with MND and families across Australia have navigated complex care decisions without a consistent national framework and clear evidence-based recommendations. These guidelines aim to change that. And they are being shaped in partnership with the people most affected by the disease.
A national collaboration shaping the future of MND care
Now halfway through its development, the project is showing what’s possible when clinicians, researchers, carers and people living with MND work together.
Forty-three people living with MND and carers are working alongside a panel of 20 clinicians and researchers, with over 200 people all together working on the guideline. Together, they are helping ensure the guideline reflects both the best available evidence and what it is really like to live with MND.
This work is already making progress.
The team are now working to develop recommendations across three key scope areas:
Models of care
Diagnosis, recognition and referral
Clinical assessment and care management
So far, three recommendations have been developed and approved by the expert panel. The first group of recommendations will be submitted for approval through the NHMRC process following the consultation process. The recommendations will be formally reviewed at a national level at this stage. A second group will be submitted later in the year, with more recommendations planned for early 2027.
The draft guideline is now also open for public consultation, giving clinicians, people living with MND, families, and the broader community an opportunity to provide feedback before final recommendations are completed.
The project has also expanded the range of “Health Outcome Descriptors” to 34. These describe what matters most to people living with MND when it comes to care and quality of life. This helps ensure the guidelines focus not only on clinical measures, but also on the real-world priorities that people with MND and their families say make the biggest difference in daily life.
Why lived experience matters
As recommendations move through development, approval and public consultation, the project’s Lived Experience Advisory Group continues to play a central role in decision-making.
Their involvement helps ensure clinical evidence is always considered alongside the day-to-day realities of living with MND.
For many participants, contributing to the project is deeply personal.
“It never ceases to amaze me how strong and resilient the MND community is and since my diagnosis I have really wanted to contribute wherever and however I can to support these important initiatives,” shares one member. “I’m fortunate to still have my speech and I want to maximise my contribution while I still can,” says Peter Chambers, Co-Chair of the Lived Experience Advisory Group.
“Being someone with lived experience provides a completely different perspective, especially when you see what others are going through and the complete random nature of this illness. That perspective is critical to widening the understanding of the disease and importantly opens up options for support and care.”
The impact of lived experience voices within the panel structure has also been widely recognised.
Chris Symonds, President of MND Tasmania and Care Guideline Panel Member, says the process has created genuine opportunities for people living with MND to influence the future of care in Australia.
“For me it’s critical those living with MND are able to share personal experiences and insights to the other Panel members. Both Phil Camden and I are living with MND and are on the Panel. There is a lived experience group forwarding information to the Panel for consideration, and as a result, many of our insights are catered for already.”
“Our voices are listened to and respected by the other Panel members. I feel we have the ability to represent the 2,700 people living with MND in Australia. The opportunity to be involved in Australia’s first MND Guideline is an honour.”
Building for long-term impact
While public consultation is underway for the first recommendations, the project team is progressing implementation and evaluation planning to help ensure the guideline leads to measurable improvements in care.
Current activities include:
Developing quality indicators to assess if recommendations are taken up and used by clinicians or care providers.
Planning a baseline evaluation study to better understand current care practices
Exploring partnerships for future implementation work to ensure recommendations are used in the real world
Investigating opportunities for a national audit process to understand the current state of MND care in Australia.
The team is also preparing to transition the guideline into a “living guideline” model, allowing recommendations to evolve as new evidence emerges and changes to healthcare and medical policy changes.
Dr Steve Vucic, Neurologist and Care Guideline Panel Co-Chair, says the project has the potential to significantly improve MND care across Australia.
“This project will be transformative for the management of people living with MND/ALS and their carers.”
Grab your Digital Beanie and help support MND research
This progress in Australia’s first MND Care Guideline shows what is possible when research, lived experience and community support come together to drive real change.
But the fight against MND is far from over. Research remains our strongest weapon against the “Beast” that is MND, and continued support is what keeps it moving forward.
This Big Freeze 12, we’re asking Australians to make a simple but powerful choice. The choice to FIGHT.
The Digital Beanie is a new way to donate in the fight against MND. You can personalise it, download it, and share it on your socials; helping spread awareness wherever you are. By choosing a Digital Beanie you’re making a difference in the fight against the Beast.
Every Digital Beanie purchased is a donation to FightMND, helping fund vital research and care programs. All purchases are tax deductible and go directly towards powering the next generation of breakthroughs.
You’ve got a phone. Use it. Donate by grabbing your Digital Beanie at bigfreeze.com.au
A motor neurone disease diagnosis is life changing. But, in Australia, your age can add further stress. Determining whether you can get access to the support you need.
For those diagnosed with motor neurone disease (MND) after their 65th birthday, they fall into a gap. Too old for the NDIS. Too young for Aged Care. Often this means that the specialist support they desperately need is out of reach.
For people in regional and remote WA, those barriers can feel even greater. Long waitlists. Limited access to neurologists. Exhausting travel for a single appointment.
Now, a new community-based service is working to change that.
FightMND has awarded a Care Support Grant to the Neurological Council of WA to establish and pilot the state’s first MND Nurse Practitioner-led model of care delivered in the community. Over two years, the project will bring specialist clinical support directly to people who need it most.
Care that comes to you
The new model places clinical expertise where people need it; at home and in their local communities. Nurse Practitioners can assess symptoms, prescribe medications, coordinate care, and support families without the delays and barriers often associated with hospital-based care.
“We’re seeing people with MND who can’t access the care they need because of where they live, their age, or systemic barriers to culturally safe care,” says Etta Palumbo, Chief Executive Officer at the Neurological Council of WA, and former carer of her mum who lived with MND. “For the first time, we’re bringing specialist care directly into homes, regional communities and to families who need support right now.”
Over two years, the service will support around 250 West Australians living with MND, including people over 65 who are ineligible for NDIS support and families in regional and remote communities facing significant barriers to specialist care.
The service will also provide carers and family members with clinical education, guidance and practical support to help navigate the system.
Led by award-winning expertise
At the centre of the project is Adrienna Elliot, an award-winning MND Nurse Specialist who recently been qualified as a Nurse Practitioner. She is a panel member for the Australian MND Clinical Guidelines and works closely with the MND clinics at Perron Institute and each of WA’s Health Service Providers.
Adrienna will lead the service with clinical supervision from Professor Merrilee Needham, one of Australia’s leading MND neurologists and Medical Director at the Perron Institute.
“Adrienna’s expertise means people receive the right care at the right time,” Etta explains. “She can manage complex symptoms, adjust medications and make clinical decisions that may have previously required a specialist appointment months away.”
Designed with the community
The program has been shaped by the people who will use it.
Families in regional towns spoke about the exhaustion of travelling long distances for appointments. Aboriginal communities highlighted the importance of Culturally Safe Care close to home. Older people living with MND described the challenges of navigating systems that often don’t fit their needs.
Outreach clinics will deliver face-to-face support in regional areas, while telehealth will reduce the burden of travel. Partnerships with local Aboriginal Community Controlled Organisations will help ensure the service is accessible, culturally safe, and responsive to community needs.
“We can’t simply replicate a city-based model and expect it to work everywhere,” says Etta. “Every community is different, and every person’s journey with MND is different. The service has been designed to adapt to those needs.”
Building a sustainable future
The project is also laying the groundwork for longer-term change.
The long-term goal is to secure Medicare funding for Nurse Practitioner services so people can continue accessing specialist care without additional financial pressure.
The initiative will also work to strengthen the connection between GPs, neurologists, palliative care teams, community nurses, and allied health providers, making it easier for people with MND to receive coordinated support closer to home.
What this means
For someone living with MND in Geraldton, it could mean seeing a specialist nurse at home instead of travelling hundreds of kilometres for care.
For a 68-year-old newly diagnosed with MND, it means receiving support that previously felt out of reach.
For carers trying to navigate an overwhelming system, it means having someone to call who understands what comes next.
“This is about dignity, equity and hope,” Etta explains. “Every person with MND deserves access to expert care, no matter where they live or what their circumstances are.”
By bringing specialist support into homes and communities across WA, the project is changing what MND care can look like and who gets access to it.
Donate this Big Freeze by grabbing your Digital Beanie
The progress being made in MND care, from programs like this being led by the Neurological Council of WA to vital research, is real. But for people living with MND, the need remains urgent.
This Big Freeze 12, we’re asking Australians to make a simple but powerful choice. The choice to FIGHT.
The Digital Beanie is a new way to donate in the fight against MND. You can personalise it, download it, and share it on your socials; helping spread awareness wherever you are. By choosing a Digital Beanie you’re making a difference in the fight against the Beast.
Every Digital Beanie purchased is a donation to FightMND, helping fund vital research and care programs. All purchases are tax deductible and go directly towards powering the next generation of breakthroughs.
You’ve got a phone. Use it. Donate by grabbing your Digital Beanie at bigfreeze.com.au
How volunteering keeps the Millar family connected to Bruce’s legacy
For the Millar family, volunteering has been a part of their DNA for many, many years.
Bruce Millar was a familiar face around Rye Football Netball Club. As the club’s volunteer Head Trainer for 15 years, he dedicated countless hours to helping players, supporting families and giving back to the local community.
But in 2011 everything changed. Bruce was diagnosed with MND.
“When dad was first diagnosed, we had absolutely no idea what MND was and were completely devastated when we learnt more about the disease,” his daughter, Lucy explains.
Bruce passed away in 2013. In the years since, Lucy, her mum Sue, sisters Amy and Elle, and their growing family have turned their energy towards fundraising and raising awareness for MND research. From the volunteering at the Big Freeze to doing Ice Bucket Challenge and Run Melbourne to trivia nights and Stadium Stomp, the family has spent more than a decade supporting the work of MND Victoria and FightMND.
Along the way, they’ve also been supported by the community Bruce loved so much. The Rye Football Netball Club continues to rally behind the family and the cause. A reflection of the impact Bruce had on the people around him.
More than a decade later, the Millar family continues to show up for the MND community, helping honour Bruce’s legacy while supporting families facing the disease today.
A decade of supporting the fight
For Lucy, the reason behind every fundraiser and volunteer shift is simple: helping other families facing MND access treatments, support and the possibility of more time.
“We volunteer and fundraise so other people and families are able to access treatments and have some hope when being diagnosed with this disease,” she says.
Since the very first Big Freeze in 2014, Lucy has shown up year after year for the cause that changed her life. One of her favourite memories is walking with the Daniher family and Melbourne supporters from Federation Square to the MCG. A tradition made even more meaningful because Bruce was a lifelong Melbourne fan.
“The feeling on the day and in those moments is just unreal,” Lucy says.
Why volunteering matters
For Lucy, volunteering is deeply personal.
“Knowing how MND impacts the individual, but also their loved ones, I wanted to contribute in some way to hopefully make a difference for anyone who will experience this in the future.”
Over the years, volunteering has also given her something unexpected: connection.
“Volunteering also helps you realise that you aren’t alone.”
When asked to describe the experience in one word, Lucy answers: “Worthwhile.”
“I really feel privileged to be able to volunteer and support the work that the team at FightMND does,” she says. “And I am so grateful and thankful for all of the people behind the scenes and in the research labs who are putting in the hours of hard work, in the hopes of one day finding a cure for this disease.”
I Choose Fight. Do you? Volunteer this Big Freeze
Make 2026 your year to volunteer. And what better time to sign up than during National Volunteer Week! Join volunteers across the country and discover how donating your time can create connection, purpose and stronger communities.
This year, FightMND is encouraging more Australians to get involved and support Big Freeze 12.
For Lucy, volunteering has become a way to honour her dad while helping create a better future for other families facing MND.
“It’s such a wonderful experience,” she says. “Everyone is so generous and you walk away feeling as though you have made a difference.”
Whether it’s your first Big Freeze or you’ve supported FightMND for years, there’s a place for everyone in the FightMND community.
Choose Fight and join us for Big Freeze 12. Sign up to volunteer today via our Volunteer Page.
Longitude Prize on ALS unveils 20 global teams advancing to Stage 1
Twenty of the world’s leading research teams have been awarded a share of £2 million (approximately AUD$4 million) as part of the Longitude Prize on ALS. The Prize aims to accelerate the global fight to find new treatments for ALS; the most common form of motor neurone disease (MND).
Following an international call for entries in June 2025, almost 100 teams from around the world competed for the opportunity to use artificial intelligence (AI) to uncover new drug targets for this devastating disease. Now, 20 multidisciplinary teams have each secured £100,000 Discovery Awards (approximately AUD$200,000 each) to fast-track their groundbreaking work.
The successful teams represent more than 70 organisations across 12 countries, including strong Australian representation from the University of Sydney, GenieUs Genomics and the University of Melbourne, alongside globally recognised institutions including King’s College London, the Paris Brain Institute, MIT, Harvard Medical School, GlaxoSmithKline and the Broad Institute.
FightMND is proud to be one of the contributors supporting this bold and innovative global prize, helping drive collaboration, accelerate discovery and create new hope for people living with MND.
Unlocking one of the world’s most powerful ALS datasets
In addition to funding, teams will gain access to one of the largest and most comprehensive ALS patient datasets ever assembled.
For the first time, researchers will be able to analyse genomic, epigenomic, transcriptomic and proteomic data together in one integrated resource. This includes genomic sequences from 9,000 people living with ALS and multi-layer biological data from more than 2,000 cases.
By combining this unprecedented dataset with the power of AI, teams will work to identify the most promising new drug targets, helping unlock faster pathways to treatment discovery and bringing new hope to people living with MND around the world.
Driving momentum towards breakthroughs
The Longitude Prize on ALS is designed to accelerate discovery at every stage.
In 2027, ten teams will progress to the next phase of the competition and receive a further £200,000 each (approximately AUD$400,000) to strengthen the evidence behind their discoveries. In 2028, five teams will receive £500,000 each (approximately AUD$1 million) to undertake critical laboratory validation, before one final team is awarded a £1 million grand prize (approximately AUD$2 million) in early 2031.
Every step forward brings us closer to what the MND community urgently needs most: effective treatments, and ultimately, a cure for the beast that is MND.
Associate Professor Shyuan Ngo: A life in pursuit of answers for MND
Associate Professor Shyuan Ngo, known to many as Shu, is a Group Leader at the University of Queensland’s School of Biomedical Sciences (SBMS) and Australian Institute for Bioengineering and Nanotechnology (AIBN). She is also one of Australia’s leading researchers of motor neurone disease (MND).
A/Prof Shyuan Ngo
Group Leader
University of Queensland’s School of Biomedical Sciences (SBMS) and Australian Institute for Bioengineering and Nanotechnology (AIBN).
But Shu’s journey into science began much earlier. When childhood television sparked a passion for discovery.
A childhood spark for discovery
Long before she became an Associate Professor, Shu was a little girl captivated by two very different television shows.
“I was absolutely fascinated by biology,” Shu recalls. “When I was a little kid, I loved watching a show called Once Upon a Time… Life. It’s a French animation about the human body and how biology works. And I was absolutely fascinated by it.”
The second show? Tintin, the intrepid reporter who travelled the world solving mysteries and helping people.
“I wanted to combine discovery through adventure with the biology I was fascinated with,” she said. “That’s what really drove me toward science.”
That early spark would grow into a lifelong passion for understanding disease and finding ways to make a difference.
A/Prof Shyuan Ngo Professional Journey
Finding her path in neurological research
Shu’s early research career focused on neuromuscular disease. She was especially interested in conditions affecting the connection between the spinal cord and muscles. But after completing her PhD, her life took a profound turn.
“When I finished my PhD, it was the time when I lost my mother to cancer,” Shu shares. “And so, I was at a crossroads. Do I want to move into cancer research? Or do I move into something similar to what I did my PhD in, but where there is greater need?”
“I thought cancer may be a bit too close to home. Maybe a bit too hard to work in,” she reflects.
Instead, she joined a team of neurologists at the Royal Brisbane and Women’s Hospital. A move that saw her step into the world of MND research for the first time. What she found there changed everything.
“I just loved the passion of the neurologists and how they wanted to make a difference for the patients they were seeing and caring for,” Shu says. “And I been on that path ever since. I haven’t looked back.”
Finding inspiration in the MND Community
For Shu, the driving force behind her work isn’t just the scientific community. It’s those living with MND.
“It’s hard when you’re given a terminal diagnosis to sometimes see hope,” she reflects. “I know that when my mum was given a terminal diagnosis, it was quite difficult to come to terms with it.”
Yet, time and again, people diagnosed with MND surprise her.
“They always find hope in something,” she explains. “They bring that hope into the research space. They’re so committed, so altruistic with their time.”
That commitment has shaped Shu’s sense of responsibility as a researcher.
“If they can bring that to the table,” she says, “why can’t I?”
Shu is deeply moved by the desire of people living with MND to reshape the future. Not just for themselves, but for those who will come after them.
“They don’t want people to hear the same thing they heard,” she says. “They want to say, ‘My contributions led to a conversation at the doctor’s where you’re told you have MND, but there’s something we can do about it.’”
For Shu, that vision underpins everything her team works towards.
The challenge of funding research
Like many Australian researchers, Shu has faced the reality of limited research funding. With national funding success rates around 10 per cent, countless worthy projects never get off the ground.
“There’s only so much funding to support everything. From fundamental discoveries like Wi‑Fi and penicillin, through to clinical trials that help people live better and longer lives,” she explains.
This is where disease‑specific funding bodies, like FightMND, play a critical role.
“The grants coming through from organisations like FightMND make a huge difference,” Shu says. “They’re keeping the MND workforce strong and they’re attracting bright minds into the field.”
For Shu, support from FightMND came at a crucial moment in her career.
“I was running out of funding,” she says. “I had no salary. Grants were ending.”
In 2019, she received news that FightMND had awarded her a Mid-Career Research Fellowship and a Drug Development Grant.
“I remember receiving news that I’d received these grants from FightMND. The relief I felt to be able to stay and do what I wanted to do for people living with this disease; I don’t think I can put into words what I was feeling,” she remembers.
“It was crucial for me being able to maintain my research trajectory, the team that we had, the young researchers who had these bright ideas that they wanted to pursue as well, so I could stay here and help support them.”
For Shu, the impact of FightMND’s support extends far beyond individual researchers. It is helping build a strong MND research workforce, now and into the future.
“The FightMND grants that are coming through and supporting the MND researchers, not only in Australia, but also globally, is making a huge difference because it’s keeping that MND workforce strong,” Shu explains. “Bright minds are staying in the field. Bright minds are being drawn to the field.”
Uniting expertise to drive progress
Shu’s passion for MND research has seen her take a leading role in a bold new chapter in MND research at the University of Queensland. The UQ Centre for MND Research is a collaboration bringing together more than 100 researchers across various disciplines, all focused on one goal: accelerating progress for people living with MND.
The Centre reflects a shift in how research is done. No longer working in silos, scientists, clinicians, engineers, physicists, chemists, data scientists, care researchers and people with lived experience are coming together to look at MND from every angle.
“We’re now at a point where we can combine neuroscience, biology, chemistry, physics, mathamatics and nanotechnology,” Shu says. “That’s when you start to push things forward at a rate we’ve never seen before.”
For Shu, the strength of the Centre lies not just in its size, but in its shared purpose. A community united by the urgency of the disease and the determination to change its course.
Shu’s vision for the future
Looking ahead, Shu’s vision is clear: a future where collaboration drives faster breakthroughs, global partnerships accelerate clinical trials, and people diagnosed with MND are met with real options.
“If we’re going to make a true impact, it has to be global,” she says. “We need to work together, share knowledge, and move discoveries into treatments as quickly as we can.”
It’s an ambitious vision. But one grounded in momentum, and in hope.
Because for Shu, the goal is simple, and deeply human: to change what comes next for people living with MND.
“A diagnosis shouldn’t be the end of the story,” she says. “It should be the beginning of a conversation about what we can do.”
Choose fight and help power tomorrow’s MND research leaders
Big Freeze 12 is back and this year we’re making a choice. The choice to FIGHT.
Research continues to be our best weapon in the fight against the Beast that is MND. By choosing fight and wearing your Beanie this Big Freeze, you’re helping researchers like Shu continue vital work focused on uncovering more about MND, exploring potential treatments and moving us closer to a cure that will one day beat the Beast for good.
Every Beanie worn sparks conversations, raises awareness and helps fund the next generation of researchers leading the fight against MND. Together, we can continue backing the brilliant minds working tirelessly to change the future for those impacted by this disease.
So what are you waiting for? You have a head. Use it. Get your Beanie today at Coles, Bunnings, Reddy Express Stores and at fightmnd.org.au
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