Longitude Prize on ALS rewards AI discoveries targeting the most common form of MND
A new international prize aims to fast-track the search for effective treatments for amyotrophic lateral sclerosis (ALS). The most common form of motor neurone disease (MND).
The Longitude Prize on ALS is offering £7.5 million (~AUD$15.5 million) to encourage the use of artificial intelligence (AI) in unlocking new drug discoveries to treat ALS. This global effort invites top researchers and technologists to work together on one of the most challenging and urgent neurological diseases.
Recent breakthroughs in AI and medical science are opening new doors for ALS, a progressive condition with no known cure. The Prize aims to turn this momentum into practical solutions that make a difference for people with ALS, their families and their carers.
Journalist Lucy Hawking, daughter of the MND Association’s late Patron, Professor Stephen Hawking, welcomed the launch of the Prize, calling it a powerful step forward:
“The Longitude Prize on ALS is a vital and important step towards increasing our understanding of motor neurone disease, and specifically ALS. Drug breakthroughs over the past couple of years, combined with rapid developments surrounding AI, put us at an exciting crossroads, where there is real promise in making marked advancements in MND research and treatment, both of which can improve quality of life for people living with the disease as well as their loved ones across the globe.”
What’s on offer
The Longitude Prize on ALS is a five-year program, structured in three phases. Multidisciplinary teams will compete to identify, prioritise, and validate promising drug targets for ALS.
The first stage of the Prize will start in early 2026. The 20 most promising applications will receive £100,000 (~AUD$200,000) to fund their project. Shortlisted teams will also have access to the most comprehensive collection of ALS patient data, curated for the Prize.
The winning team will go on to win £1 million (~AUD$2 million) at the end of the five-year Prize to continue advancing treatments for ALS.
Why this Prize matters
Amyotrophic lateral sclerosis is a form of MND. It remains without a cure or long-term treatments. For the first time AI offers the potential to outpace the disease by unlocking a decade’s worth of patient data. Historically, this data was trapped in fragmented, inconsistent or hard-to-access formats.
Who can apply
The Prize is open to innovators from around the world across medical research, biotech, pharmaceuticals and AI sectors.
Teams must show potential in their proposed method and team make-up. Teams should bring together expertise from across multiple disciplines. This includes ALS research and computational biology.
How to apply
Applications for the Longitude Prize on ALS are now open. They will close on 4 December 2025 at 2am AEDT.
The cold never felt so good! Queensland and Western Australia the Big Freeze 11 is rolling into town this weekend. The Brisbane Lions and West Coast Eagles are living it forward and turning up the chill in support of FightMND. With icy plunges, surprise guests, and thousands of Beanies, the fight against motor neurone disease (MND) is gaining serious momentum.
Whether you’re watching from the Gabba, cheering at Optus Stadium, sharing your Digital Beanie online or sporting a Beanie from your lounge room, there’s never been a cooler way to support a vital cause.
Queensland: Dare to Do and Wear Blue!
Queenslanders are known for their fierce loyalty to the maroon in June. But this year, we’re calling on you to switch things up. Just for a moment. Dare to Do by wearing blue! Why? Because we’re standing side-by-side with FightMND Co-Founder and Aussie legend Neale Daniher, your 2025 Australian of the Year, and every Queenslander battling MND today.
Come down to the Gabba on Saturday 14 June as the Lions take on GWS and get ready for a chilly thrill. One lucky Lions fan and a club legend will take on an icy challenge at quarter time to send a big, icy message to MND: We’re coming for you.
Big Freeze 11 Beanies and Caps will be on sale at the game. So, don your Beanie, or Cap, and show your support for the fight against MND.
Freeze the Day in WA
On Sunday 15 June 2025, the WA Freeze returns to Optus Stadium as the West Coast Eagles host Carlton in a blockbuster event. Fans can grab Big Freeze Beanies, enjoy pre-game activities and watch as club legends and special guests take the icy plunge all in the name of raising funds for MND research.
Dress in your blue Beanie and join thousands of supporters turning the stadium into a sea of hope and action against MND. Don’t have your Beanie yet? Don’t worry. Beanies and Caps will be available at the game!
Support your Australian of the Year and grab a Digital Beanie
Can’t be there in person? No problem! You can still join the freeze movement by buying a Digital Beanie at bigfreeze.com.au
This year we have a BIG goal. We aiming to sell 100,000 Digital Beanies in support of Neale Daniher and every Australian living with MND. But we need your help to get there. Help us reach our goal by donating and grabbing your Digital Beanie today at bigfreeze.com.au
Each Digital Beanie sold fuels research breakthroughs and helps support families affected by MND. So, download it, share it on social media, stand tall, and be part of a nation-wide freeze!
Today’s the day. Big Freeze 11 is here. You know what that means! Celebs in iconic costumes, ice-cold plunges, footy at the ‘G and a nation coming together to take on the Beast that is motor neurone disease (MND).
This year’s Big Freeze theme is iconic Australians, with a legendary slider lineup to match! Watch Olympic champion Ariarne Titmus, AFL greats Peter Daicos and Aaron Davey, cricket stars Alyssa Healy and Mark Taylor, motorsport hero Craig Lowndes, cycling legend Cadel Evans, sporting legend and creative force Matt Nable, netball star Liz Watson and all-round Aussie icon Matt Shirvington don outrageous costumes and plunge into freezing water. All in the name of funding vital research and support for people living with MND.
These sliders are here to celebrate the icons who’ve shaped Australia, while becoming icons of a different kind. Those who fight for a world free from MND.
Honouring your Australian of the year
At the heart of it all is Neale Daniher. The man who started this movement with the late Dr Ian Davis and Patrick Cunningham back in 2014. A man who’s faced MND head-on with humour, guts and grit and who continues to inspire us all. This year, he’s not just an AFL and MND advocate. He’s your 2025 Australian of the Year.
Donate by grabbing a Digital Beanie
This Big Freeze, we’ve called on Australians to Live it Forward. To do something bold to help shape a better future for people living with MND.
One way to show your support is to get behind your Australian of the Year and donate by grabbing a Digital Beanie. The Digital Beanie is a fun new way to show your support for Australians living with MND, their families and their carers.
Grab your Digital Beanie and customise it with a name of your choice. Want to add some flair? Throw in special edition pins to make it uniquely yours! Once you’re done, download it and share it with your mates on social media.
Your Digital Beanie is more than just virtual tile. It’s a way to rally your crew and help grow the FightMND Army like never before.
And this year, we’ve set a massive goal. We want to put a Digital Beanie on EVERY seat in the MCG!
But we can’t do it without YOU!
Get behind your Australian of the Year. Donate by grabbing your Digital Beanie at bigfreeze.com.au
It’s fun and it funds game-changing research. Plus, it shows you’re in the fight and living it forward for those who can’t.
Life might only be understood looking back, but today, we live it forward. Let’s write the future one Digital Beanie at a time.
The sliders are putting the finishing touches on their costumes. The Slide is in position. Tomorrow, Monday 9 June, you’ll witness all the icy action of Big Freeze 11! There are many ways you can be part of the action this King’s Birthday Monday to show your support for FightMND and the battle against motor neurone disease (MND).
Whether you’re cheering from the stands, participating in the Zurich Walk to the ‘G, or watching from home in your Big Freeze Beanie, this is your moment to be part of something truly powerful. Helping to raise awareness and funds to one day cure MND.
Want to join us for Big Freeze 11? Here’s how!
No matter where you are in Australia, or around the world, there are many ways you can live it forward in the fight against MND this King’s Birthday.
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 at Federation Square
Donate by grabbing a Digital Beanie: help FightMND fill the G with Digital Beanies this Big Freeze.
Wear your Big Freeze 11 Beanie: Don your Big Freeze 11 Beanie and wear it with pride
Get Social: Help spread the word! Share your Big Freeze moments using #BigFreeze11.
What’s Happening on Big Freeze 11?
From the Walk to the G festivities at Federation Square to the thrilling AFL showdown between the Dees and the Pies, here’s your guide to the day’s events so you don’t miss a moment of the action:
10:00am: Zurich Walk to the ‘G festivities start at Federation Square
12:15pm: Walk to the MCG starts
12:30pm: Public gates open at the MCG
2:00pm: It’s time for the Big Freeze Slide! Watch as our brave Sliders take the icy plunge for MND awareness.
3:20pm: Game time! Watch Melbourne and Collingwood go head-to-head in the annual King’s Birthday clash!
Can’t make it to the game? Don’t worry. Catch all the Big Freeze 11 action from 2:00pm AEST live and free on Seven and 7plus Sport.
Walk with the Dees at the Zurich Walk to the ‘G
Kick off your King’s Birthday morning with the spirit of community at the Zurich Walk to the ‘G! From 10:00am, Federation Square transforms into a buzzing hub of entertainment, Q&As with Melbourne players past and present, kids’ activities, giveaways and fun activations, all in support of FightMND.
Grab a Big Freeze Beanie, enjoy a snag at the Demon Army BBQ and soak up the energy before thousands of supporters make their way to the MGC at 12:15pm. It’s a feel-good, family-friendly way to start your Big Freeze Day.
Can’t make it to the Big Freeze event in person? The Big Freeze 11 Digital Beanie is the perfect way to show your support from anywhere!
Grab your Digital Beanie now at bigfreeze.com.au. Make it yours, download it, share it online and tag @fightmnd to show the world you’re in the fight.
Feeling bold? Rally your team, your family, or your workplace and grab a Digital Corporate Box. A chance to lead from the front and make an even bigger impact.
And this year, we’ve set a massive goal. We want to put a Digital Beanie on EVERY seat in the MCG! Imagine a virtual stadium packed with Digital Beanies, standing as a symbol of community, strength and hope.
But we can’t do it without YOU!
Motor neurone disease doesn’t stop. But neither do we. With every Digital Beanie, we build hope. With every name, we celebrate our collective power to make change. And with every share, we grow a community that refuses to give up.
For Dr Thanuja Dharmadasa, the journey into neuroscience began not in a lab or lecture theatre, but at a piano.
As a child, she spent countless hours immersed in the technical brilliance of classical composers like Bach and Chopin. “The ability of the hands to move both dependently and independently across the keys was a realisation of the extraordinary capabilities of the human motor nervous system,” she recalls.
It was her first encounter with the elegance and complexity of the brain’s control over the body. A fascination that would ultimately steer her toward a career in neurology.
But it wasn’t just academic curiosity that drew her in. As a young doctor, Thanuja met her first patient living with Motor neurone disease (MND). A fit and active 45-year-old former mountaineer and father of two. He died just 20 months after the onset of his symptoms.
“It was a confronting realisation of how devastating this disease is, and how little we still understood,” she says. “It also sparked a question that continues to drive me: how can someone be completely healthy for decades, then suddenly have their nervous system collapse so quickly?”
That question has become the heartbeat of Thanuja’s work.
A clinician on a mission
Now a clinician-researcher at the Royal Melbourne Hospital and The Florey Institute, and a FightMND grant recipient, Thanuja is determined to find the answers patients and families so desperately seek. What causes MND? When and where does it begin? And how can we stop it?
Since starting her career, she’s seen major strides in MND research. Advances made possible by ongoing support from the Australian community and organisations like FightMND.
“We’ve uncovered much more about the disrupted pathways in this disease and have made huge gains in understanding the mechanisms involved,” she explains. “There have also been breakthroughs in genetics. For example, for people who carry the SOD1 gene variant. We’ve learned that targeted treatment is possible. That’s a huge shift. It means we can change the course of this disease if we act precisely and early enough.”
Catching MND before it strikes
One of the most exciting frontiers in MND research is the growing recognition that the disease begins long before symptoms are visible. This is known as the prodromal or presymptomatic phase. This critical window, potentially lasting months or even years, could hold the key to earlier detection and intervention.
Thanuja is determined to explore this space.
In her current research, Thanuja is harnessing cutting-edge neuroimaging technology, including one of Australia’s only 7-Tesla MRIs, to study the brain in extraordinary detail.
“By using these tools, we can look at the structure, function, chemistry and networks of the brain, even before symptoms emerge,” she explains. “Our goal is to identify where things go wrong and why they progress the way they do. We also want to understand why symptoms can vary so much between people.”
Behind every scan is a person asking, “Why me?” And thanks to organisations like FightMND, Thanuja’s work is helping bring answers closer.
Research meets real life
Thanks to a recent FightMND grant, Thanuja has integrated her research directly into clinical care. Her dedicated MND clinical research service at Royal Melbourne Hospital ensures that patients not only receive world-leading care but also have the opportunity to participate in research that may change the future of the disease.
“We’re working closely with national researchers and our collaborators at Oxford University,” she says. “This means our patients are directly contributing to global efforts and, we hope, will one day benefit from more personalised and effective treatments.”
Powering progress, together
While the science is critical, Thanuja is quick to emphasise the power of people in driving progress.
“Research is time-consuming and expensive. The public has played a vital role in fuelling this work through awareness, advocacy, and funding,” she says. “The impact of FightMND has been unprecedented. Every donor, every fundraiser, every person who helps keep this cause in the spotlight is making a real difference.”
The fight against MND isn’t over. But with passionate communities and researchers like Thanuja leading the charge, there’s real hope on the horizon.
“We are getting closer to answers,” she says. “And with continued momentum, I believe we can change the future of this disease.”
Donate by grabbing a Digital Beanie
This Big Freeze 11, write the future by donating to help fund groundbreaking research like Thanuja’s.
By purchasing a Digital Beanie, you’re not just showing your support. You’re making a real impact. Every Digital Beanie is a tax-deductible donation that helps fund world-leading researchers working to unlock the mysteries of MND.
Research is expensive and takes time. That’s why we need your help.
Personalise your Digital Beanie, download it, share it on social media and rally your crew to join the virtual FightMND Army. Help us reach our goal of getting a Digital Beanie on every seat of the MCG this Big Freeze.
Remembering Dr Ian Davis OAM: a drive to find a cure for MND
When Ian Davis was diagnosed with motor neurone disease (MND) at just 33, the shock hit like a tidal wave. A fit, healthy doctor with a sharp mind and compassionate heart, Ian understood better than most the weight of his diagnosis. He knew the science. He knew the trajectory. And in that moment, he knew life had changed forever.
But Ian didn’t just accept his fate. He fought for others to have a better one. Today, his fight continues through FightMND. You can keep Ian’s legacy alive by making a tax-deductible donation before 30 June.
A Cruel Diagnosis That Changed Everything
“He was doing a neurological exam on a patient,” his wife, Dr Melissa Yang recalls, “and he asked them to stand on their toes. Then he realised. He couldn’t do it himself.” It was the first sign something was wrong. Not long after, while walking the dogs, he noticed a limp. Within months, the devastating diagnosis came.
The early days were filled with grief and silence. Ian kept his diagnosis private, sharing it only with close family. Ian and Melissa rushed to marry within three months, not knowing how long he’d be able to walk. Few people at the wedding knew what was happening. “You’re grieving the future you thought you had,” she says. “It was possibly the hardest part of the whole journey.”
No one should have to endure this heartbreaking reality. Your donation could help fund life-changing research, because MND is relentless, but so is our fight against it.
Building a Movement That Matters
Determined to prevent others from enduring the same path, Ian channelled his energy into founding FightMND alongside Pat Cunningham and Neale Daniher. What began as a small, determined push has grown into one of the world’s largest independent funders of MND research.
Ian, Neale and Pat had three aims for FightMND. To Cure, to Care and to Make Aware.
Ian’s medical background gave him a unique perspective on the systemic gaps in MND research. He saw that most efforts were focused only on late-stage treatments, without understanding the disease’s full trajectory. He advocated for a more comprehensive funding model. A model that supports research across the entire research pipeline, from addressing the unknowns in MND to clinical trials. He worked to design a grants process rooted in rigour and integrity, ensuring every donation was maximised for impact. A process that is still in place today.
Ian never took a single donation for granted. “He knew it was mums and dads, kids, families giving what they could,” Mel explains. “He wanted to make sure every dollar counted.”
Every donation counted then, and every donation counts now. Donate todayto fund world-leading research and care projects supporting Australians living with MND.
Friend, husband, dad, scientist, fighter
Despite the cruel toll of MND, Ian remained a source of energy, wit, and warmth. Charismatic and brilliant, he had a presence that filled every room. “He could inspire people to get on board with anything,” Melissa reflects. “Whether it was a party or a cause, he made you want to be part of it.”
His legacy lives on not only in the progress of FightMND but in the life of his son, Archie. Though Archie was only a toddler when Ian’s condition worsened, he carries strong memories of riding on his dad’s electric wheelchair to the park, laughing as they zipped along the footpath. “He was always around,” Melissa says. “Working from home before everyone else was doing it.”
Now in school, Archie is developing a keen love for science and a fierce loyalty to his AFL team, the Western Bulldogs. He’s also understanding the impact his dad had on the world. “He sees the Big Freeze slide on TV, the pictures and newspaper articles of Neale and, of course, the Beanies and he beams with pride knowing this is his dad’s legacy,” explains Melissa. “He understands now. He knows his dad helped start something that is helping thousands of people. And that means everything to him.”
A lasting legacy
If Ian were here today, Melissa believes he’d be astounded by how far things have come. From the awareness to the science to the groundswell of community support. “He’d be so proud of the foundation. So proud of Neale. So proud of Dr Bec Sheean and the work she’s done in the programs space. And he’d be amazed by how much Australians have got behind the fight.”
But Melissa knows he’d keep pushing. Keep fighting. Because despite all the progress, MND remains a devastating, terminal diagnosis.
“MND is not rare,” she says. “It’s just that people don’t live long with it, so it seems invisible. But it’s not. It’s cruel and lonely and heartbreaking, for everyone. That’s why the fight matters so much.”
And at the heart of that fight, fuelled by science, by community and by love, remains the legacy of Ian Davis. A man who turned personal tragedy into collective purpose. A trailblazer in life, in research and in hope.
Donate by 30 June – EOFY
Dr Ian Davis didn’t just fight MND. He helped create and lead a movement. As co-founder of FightMND, his vision was to drive cutting-edge research and give hope to the thousands living with this devastating disease.
You can help continue Ian’s life’s work. When you make a tax-deductible donation before 30 June, you’re helping fund the kind of research Ian believed in. Science that could one day lead to a cure.
By making a donation before the EOFY, you’re not just showing your support. You’re making a real impact. Every tax-deductible donation helps fund world-leading researchers working to unlock the mysteries of MND.
Research into MND is time consuming, expensive and urgent. But with your help, we can keep fighting.
That’s right. This year we’re shaking things up with a fun, fresh way to show your support and help us beat the Beast that is motor neurone disease (MND). Whether you’re cheering from the stands, your couch or anywhere in the world, you can join the FightMND Army online!
What is the FightMND Digital Beanie?
Think of the Digital Beanie as your personal virtual badge of honour! Donate by grabbing your Digital Beanie and customise it with a name of your choice. Want to add some flair? Throw in special edition pins to make it uniquely yours! Once you’re done, download it and share it with your mates on social media.
Your Digital Beanie is more than just virtual tile. It’s a way to rally your crew and help grow the FightMND Army like never before.
And this year, we’ve set a massive goal. We want to put a Digital Beanie on EVERY seat in the MCG! Imagine a virtual stadium packed with Digital Beanies, standing as a symbol of community, strength and hope.
Donate to FightMND by grabbing yours for just $25 at bigfreeze.com.au
Personalise your Beanie your way by adding exclusive pins for $5 each!
Want to make a bigger impact? Digital Corporate Boxes start at $100. Perfect for businesses and teams who want to step up for the cause!
Every Digital Beanie purchase is a tax-deductible donation that directly funds vital research and support programs for Australians living with MND and their families.
You’re not just grabbing a Digital Beanie. You’re writing the future in the fight against this devastating disease.
Rally the virtual FightMND Army!
Once you’ve secured your Digital Beanie, spread the word and get everyone involved!
Share it on social media and tag us @fightmnd
Use hashtags #BigFreeze11 and #FightMND to inspire others to join the movement!
The more Digital Beanies out there, the stronger our message and the closer we get to a world without MND.
What are you waiting for?
Let’s get a Digital Beanie on every seat of the MCG.
A life lived to the fullest. Matt Nable on his brother, Aaron’s, fight against MND.
In July 2022, Matt Nable’s youngest brother, Aaron, was diagnosed with bulbar onset motor neurone disease (MND). By the time he received his diagnosis, the disease had already taken a heavy toll. Aaron’s speech had slowed so much that people struggled to understand him. As a result, he began pulling away from social situations. A dramatic shift from the vibrant personality that defined him.
“I never thought it would be MND,” Matt explains. “I always thought MND started in the hand or the leg.”
In the 20 months that followed, Aaron’s condition deteriorated rapidly. “It was just a progression of milestones as the disease took more and more from him,” said Matt. “First it was his speech. Then his ability to eat. His ability to walk. And then his ability to move at all. It was incredibly hard to watch”
A man who lived every moment
Matt remembers Aaron as a person who quickly made an impression. Charismatic, gregarious and full of life, he had a rare ability to bring people together. He was the heartbeat of every gathering, the one people gravitated toward, the one who made sure there was always laughter in the room.
But beyond his larger-than-life energy, Aaron was deeply kind. He cared fiercely about others. Always standing beside the underdog. Rooting for the quiet worker in the corner. Compassion wasn’t just something he carried. It was who he was.
Aaron died from MND in March 2024 at the age of 46. His loss was felt deeply, not only by his family but by the countless people whose lives he had touched. Nearly 2,000 people attended his funeral. A testament to the profound impact he had on those around him.
“That tells you who he was,” Matt reflects. “He had a real impact on people. He really was a beautiful man.”
Fighting for a better future for those with MND
Aaron’s story has lit a fire within Matt. A deep conviction that research into MND needs far more urgency, attention and funding.
“It’s 2025 and there’s still no cure,” he says. “Not just that there isn’t a cure. There’s no real way to slow it down. People aren’t gaining years, they’re still being told, ‘You’re terminal.’ That’s just not good enough.”
Matt is hopeful continued pressure, and awareness can help raise the funds researchers need to make breakthroughs. “We need to be talking about therapies that can slow the disease. That can stop it in its tracks. Maybe we won’t find a full cure straight away, but if we can halt the progression, give people time, give families hope, that would change everything.”
“Until people experience seeing a loved one robbed of their ability to speak, eat, walk, it’s hard to comprehend how devastating MND is. That’s why research is imperative. It’s our only hope for stopping this disease in its tracks,” Matt explains.
But MND doesn’t just impact the person diagnosed. It deeply affects their family as well. The emotional, physical, and financial toll can be overwhelming, making investment in care just as important as research itself. “Without professional support, the toll on families is enormous,” Matt says. “No one should face this alone. That’s why investing in both care programs and MND research is so important.”
The power of advocacy
For Matt, the work of Neale Daniher to advocate for research into treatments and, one day, a cure for MND has inspired countless Australians. Himself among them.
“Neale’s advocacy has had a significant influence on me,” Matt reflects. “I was already looking to do something in this space. Advocacy, awareness, and supporting the fight against MND. Neale’s work connected me with Bec and others wanting to make a difference. Without the platform Neale has built, I wouldn’t be involved the way I am.”
Daniher’s FightMND organisation has raised millions of dollars, pushing forward research efforts while fostering national awareness. His determination and courage led to him being named Australian of the Year, an acknowledgment of his profound impact.
Uniting a nation
Events like FightMND’s Big Freeze have become significant moments in Australian culture, bringing people together for a common cause. The overwhelming support for these initiatives highlights the country’s dedication to finding a cure for MND.
“Oh, it’s great,” Nable says of the solidarity shown. “It’s about galvanising a community. Not just those directly impacted by MND, but everyone who understands that we need to take action. The awareness, the publicity, and the money raised all contribute to research that could find a cure or treatments to slow the disease’s progression. FightMND and the Big Freeze have been amazing.”
The future for MND research
For Matt, the fight against MND is deeply personal. He has seen firsthand the devastating effects of the disease and the urgent need for continued support and funding.
“MND is not as rare disease as people think it is,” he states. “I saw two people I knew die of MND within a year. I don’t know two other people who’ve died of the same thing. That really puts it into perspective for me.”
“A lot more people are gonna be affected by it, either as patients or surrounding family members. With what my family has been through, you wouldn’t wish upon anyone,” Matt reflects.
With events like the Big Freeze continuing to inspire action and raise crucial funds, Nable remains committed to raising awareness and supporting the battle against MND. His hope is that, through collective effort, we can continue pushing forward to find solutions and provide relief for those affected by this disease.
“Real efforts to raise awareness and funds to power research are vital,” Matt states. “That action, that grows and moves across the community, that is going to play an important role in getting numbers to move the other way.”
Live it forward this Big Freeze and join the fight
This Big Freeze join the FightMND Army and live it forward for those in the fight against MND.
By supporting FightMND, you’re helping invest in groundbreaking MND research and programs supporting Australians living with MND, their families and carers.
Wear your support by grabbing a Big Freeze 11 Beanie from Coles, Bunnings, select Shell Reddy Express stores and online at fightmnd.org.au
There are many ways you can get involved this Big Freeze. Wear your Beanie, pull up your Socks, host a DIY Big Freeze event or find a creative way to join the fight. Every effort makes a difference.
Don’t forget to share your support. Tag @fightmnd and use #BigFreeze11, #LiveItForward, #TeamUpForBigFreeze11, and #FightMND on social media to spread the message and inspire others to take action.
Together we can live it forward and strive towards a world free from MND.
Professor Anthony Akkari: Shaping a new era in MND research
For more than 30 years, Professor Anthony Akkari has been researching diseases of muscle and nerve including motor neurone disease (MND) in Australia and the USA. From his early days as a young geneticist to leading one of the nation’s most innovative research teams at Perth’s Perron Institute, Anthony’s work has been shaped by scientific breakthroughs and deeply personal experiences. Today, he’s helping pioneer a new era of precision medicine that could transform the lives of people living with MND.
A career sparked by a breakthrough
Anthony’s journey began in the early 1990s in the lab of Professor Nigel Laing at the Australian Neuromuscular Research Institute, now known as the Perron Institute. At the time, very little was known about the genetic causes of MND. That changed when the team joined a global effort led by Professor Teepu Siddique to identify the first gene associated with the disease: SOD1.
“We studied a large family in WA with inherited MND,” Anthony recalls. “What struck me most was that both a mother and son carried the same SOD1 mutation. The son died in his 40s, but the mother lived into her 80s. It showed me how unpredictable this disease can be. Even within the same family.”
This early insight left a lasting mark on Anthony and sparked a deep interest in understanding the complex biology of MND. That interest would later become profoundly personal when Anthony’s own father was diagnosed with the disease.
“My dad was a strong, independent man. The kind of person who never asked for help,” Anthony says. “Watching him slowly lose his ability to speak, to move, to connect, was heartbreaking. It brought home in a very real way what MND takes from people. Not just their physical abilities, but their sense of self.”
His father’s diagnosis gave Anthony a new perspective, and a deeper sense of purpose. “It wasn’t just about research anymore. It was about doing everything I could to change the future for other families facing the same devastation.”
From “black box” to breakthroughs
When Anthony began his career, MND was widely seen as a uniformly fatal disease with few known causes and no effective treatments.
“It was a black box,” he says. “We were describing symptoms, not understanding the mechanisms. There were no genetic tests, no targeted therapies and very little hope.”
But over the last 30 years, that has changed dramatically. Researchers have now linked more than 50 genes to MND, including SOD1, TARDBP, FUS, and C9orf72. These discoveries have revealed that MND is not a single disease. Rather, it is a group of disorders with varied genetic and molecular roots.
“We now understand that MND involves things like RNA dysfunction, mitochondrial damage, protein misfolding, and chronic inflammation,” Anthony says. “That insight allows us to design therapies that go beyond symptom relief and start targeting the disease at its source.”
Leading the charge on gene therapies
At the Perron Institute, Anthony co-leads a team with Dr Loren Flynn, focused on developing gene-targeting therapies for rare and inherited forms of MND. Their work centres around antisense oligonucleotides (ASOs), small molecules that can silence or fine-tune faulty genes.
Their most advanced project, BSB-0001, targets SOD1, the same gene that first sparked Anthony’s interest in MND. After strong results in the lab, the therapy is now being prepared for clinical trials.
They’re also developing ASOs that target TARDBP, which regulates the toxic TDP-43 protein found in nearly all MND cases. Another project is aimed at FUS, using a technique called allele-specific silencing to shut down only the defective gene while preserving the healthy copy.
“This is the promise of precision medicine,” Anthony explains. “Therapies tailored to the individual based on their own DNA and their unique disease biology.”
A vision for personalised medicine
Anthony envisions a future where every person with MND receives a personalised treatment plan. “When someone is diagnosed, we’ll take a DNA sample and a small skin biopsy,” he says. “We’ll use that to build a model of their disease in the lab, test a range of gene therapies, and find the one that’s most likely to work for them.”
Thanks to advances in stem cell science and high-throughput screening, this vision is closer than ever — but it will take close collaboration with regulators and continued investment to make it reality.
“Our goal is that no one with MND is left behind — no matter how rare their mutation or how complex their biology,” he says.
FightMND and the power of community
Anthony credits much of his team’s progress to the support of FightMND , which has provided crucial funding for high-risk, high-reward research.
“FightMND has given us the freedom to pursue ambitious projects and the resources to move them toward the clinic,” he says. “They’ve also helped build a true community, researchers, clinicians, patients, and families all working together.”
He’s especially grateful for their investment in early-career scientists, ensuring that the next generation continues to drive innovation in the field.
A message of urgency and hope
Anthony’s message is clear. The outlook for MND is changing.
“We don’t have a cure yet, but we now have therapies that can target the root causes of the disease. That’s a huge step forward,” he says. “The science is ready. The tools are here. Now we need to move fast. For every person living with MND, and every family like mine.”
For Anthony, this work is deeply personal. A tribute to his father, and to everyone who has faced the devastating impact of MND. “With continued support, collaboration, and compassion, I believe we can rewrite the future,” he says. “That belief, that hope, is what keeps us going.”
Live it forward and fuel the future of MND research
This Big Freeze, join the movement to defeat the Beast by supporting vital motor neurone disease (MND) research. Every Big Freeze 11 Beanie sold helps fund cutting-edge scientific projects focused on finding effective treatments and, ultimately, a cure for the Beast.
By donning your Beanie or pulling up your Socks, you’re helping to accelerate clinical trials, back world-class researchers and bring promising therapies from the lab bench to the bedside. From gene-targeting treatments to personalised medicine, the funds raised are making a real impact on the future of MND.
Grab your Beanie today from Coles, Bunnings, select Shell Reddy Express stores or online at fightmnd.org.au. Wear it proudly and share your efforts on social media. Tag @fightmnd and use #BigFreeze11, #LiveItForward, and #FightMND.
Together, we can live it forward for those fighting MND today and help create a future free from this devastating disease.
Diamond Creek Junior Football Club freezes for a cause close to home
For Diamond Creek Junior Football Club (JFC), footy has always been about more than just what happens on the field. It’s about mateship, community and standing shoulder to shoulder when it matters most. They are a community with heart.
That community spirit was on full display at their 2024 DIY Big Freeze event. An unforgettable night of fundraising, footy and icy plunges for a cause that hits close to home.
“The Diamond Creek Junior Football Club DIY Big Freeze has become the most anticipated event on our calendar,” says Cairenn (Caz) O’Donoghue, the powerhouse organiser behind the club’s Big Freeze efforts. “It’s more than a game. It’s a night of remembrance, hope and action.”
And the numbers back that up. In 2024, Diamond Creek JFC raised an incredible $28,000. A huge leap from their $7,500 total just a year earlier. Every dollar raised goes directly to FightMND ’s mission to find effective treatments and ultimately a cure for motor neurone disease (MND).
From modest beginnings to a local movement
The club’s Big Freeze journey began with a dunk tank and a few brave volunteers. Now, it’s a full-scale community event with footy legends, live auctions, and a growing crowd of supporters.
That growth, she says, comes from a deep, shared connection to the cause.
“In our first year, we were just hoping to raise a few thousand dollars,” Caz reflects. “Now we’ve got people sliding into ice baths, ex-AFL stars coaching teams, and people lining up to donate. It’s amazing how it’s grown.”
“The work of FightMND is a cause that resonates deeply. Not just with us, but across the AFL community,” Caz reflects. “That’s why we’re proud to stand together, year after year, to raise awareness and funds.”
Legends and laughter
The club’s 2024 DIY Big Freeze event brought some big moments. Ray Shaw returned to don a junior coaching bib for the first time in three decades. His brother, Tony Shaw, had the crowd in stitches, and reaching for their wallets, as the event’s auctioneer.
“The support from AFL greats has been phenomenal,” says Caz. “That support has gone even further in 2025. Especially when the Prime Minister gave us a shoutout! That was surreal. It just shows how far our little club’s impact has reached.”
Tip tips for a successful MND fundraiser
According to Caz, running a successful DIY Big Freeze starts with one key ingredient. People who care.
“Building a passionate team is vital. Everything we have achieved has been because of the commitment and energy of our volunteers, families and players.”
Organisation is also key. Caz recommends getting your FightMND merchandise early “The earlier you’re prepared, the more you can raise.” And when it comes to spreading the word, don’t underestimate the power of social media. “Tag FightMND in your posts, share updates, photos, and videos. The more people know about what you’re doing, the greater the impact.”
“We are proud to support the incredible work of Neale Daniher and the FightMND team in their mission to find a cure for this devastating disease.”
Come down to the Diamond Creek JFC DIY Big Freeze
So, what’s next for this passionate club? In 2025, Diamond Creek JFC is taking things to a whole new level. This year’s event will feature a charity footy game played with the winners claiming the inaugural Diamond Creek MND Cup. This brand-new trophy will be contested each year.
Coaching the teams will be North Melbourne VFL’s Darcy and Ewen MacPherson, with AFL legends Ray Shaw and Terry Daniher stepping up as team managers. And for the first time ever, players will brave the FightMND Ice Slide after the match. A fittingly icy finish to a night full of fire and community spirit.
If you’re in the Diamond Creek area, don’t miss this special event. Head down to Coventry Oval on Friday 30 May, with the game kicking off at 7PM. Bring your mates, don your Beanies and help fight the Beast.
Dare to Do and bring the Big Freeze to your community
This year, FightMND is calling on Aussies everywhere to dare to do and take action in the fight against MND. Whether it’s hosting your own DIY Big Freeze event, getting involved in your local club’s Community Round, or proudly pulling on a pair of Big Freeze 11 Socks or donning your Beanie, every effort makes a difference.
It’s about standing together, raising vital funds, and showing those battling MND that they are not alone. So gather your team, get creative, and be part of the movement to fight the Beast.
