Cracking the MND code: Professor Heath Ecroyd’s research into protein clumping 

Motor neurone disease (MND) is a devastating illness that gradually takes away a person’s ability to move, speak, eat, and breathe. But a new research project led by Professor Heath Ecroyd from the Faculty of Science, Medicine and Health at the University of Wollongong titled Establishing how and why protein aggregates escape molecular chaperones in the context of MND is shedding light on one of the disease’s most puzzling biological features. Toxic protein clumps that form in nerve cells. 

With the backing of a 2024 FightMND Discovery Project Grant, Professor Ecroyd and his team are on a mission to understand why these protein clumps, called inclusions, form in motor neurons and how they contribute to the progression of MND. 

Understanding the Body’s Cellular “Clean-Up Crew” 

Under normal conditions, our bodies have ways of managing wayward proteins, thanks to a specialised group of proteins known as molecular chaperones. These chaperones act like quality control agents in the cell, ensuring other proteins are folded correctly and don’t clump together. 

“Molecular chaperones are essential for keeping our cells healthy,” says Professor Ecroyd. “But in MND, this defence system seems to fail, allowing dangerous protein clumps to build up and ultimately destroy the motor neurons.” 

The big question, he explains, is why this clean-up system breaks down and whether we can find a way to restore, or enhance it.  

A Systematic Search for Solutions 

What makes this project groundbreaking is its systematic approach. While previous studies have explored the role of individual molecular chaperones in MND, Professor Ecroyd’s team is taking it several steps further. 

“This is the first time anyone has screened all of the molecular chaperones in the cell to find out which are the most effective at stopping these toxic clumps from forming,” he says. 

Using cutting-edge molecular biology tools, the team is identifying which chaperones are most powerful in preventing protein aggregation. The goal? To turn that knowledge into new treatment strategies for MND. 

“If we can understand which chaperones are key, we may be able to develop drugs that boost their function or mimic what they do naturally,” Professor Ecroyd explains.

Global Collaboration and Community-Powered Progress 

The research is a collaboration between the University of Wollongong, Macquarie University, and international partners in Spain, positioning Australian researchers at the forefront of global efforts to uncover the root causes of MND. 

But world-class science needs world-class support. And that’s what FightMND provides. With funding from its Cure Grant Program, Professor Ecroyd and his team have been able to take on this ambitious work. 

“This research wouldn’t be happening without the generous support of FightMND,” he says. “The grant allows us to employ expert scientists, purchase vital materials, and access the cutting-edge equipment we need.” 

He also stresses the critical role of everyday Australians who donate to the cause. 

“Research into MND is expensive, and government funding is limited. Donations to FightMND are not just helpful. They’re essential. They allow us to keep talented researchers in the field and give them the resources they need to do groundbreaking work.” 

For Professor Ecroyd, the path to a cure depends on both scientific determination and public generosity. 

“If we want to stop this disease, we have to invest in the science,” he says. “Thanks to FightMND and the Australian public, we’re making real progress. Every discovery brings us one step closer to giving people living with MND the hope and answers they deserve.” 

Help FightMND invest in vital research during Big Freeze 11 

This Big Freeze, FightMND is daring the Australian community to come together and live it forward for those who can’t. Show your support by purchasing your Big Freeze 11 Beanie from Coles, Bunnings, select Shell Reddy Express stores and fightmnd.org.au. 

Join the FightMND Army and show us how you’re living it forward. Snap photos with your Beanie, host events, or come up with creative ways to freeze MND. Share your efforts on social media. Tag us @fightmnd and use the hashtags #BigFreeze11, #LiveItForward, #TeamUpForBigFreeze11, and #FightMND. 

Let’s live it forward this Big Freeze 11. Together, we can defeat the Beast. 

 

Combining technologies to treat MND: Associate Professor Fazel Shabanpoor’s research 

Imagine a world where we could fight motor neurone disease (MND) on multiple fronts at once. Targeting the processes causing the disease to progress. Associate Professor Fazel Shabanpoor, a 2024 FightMND Drug Development Grant recipient, is researching how to make this vision a reality. 

As a researcher at the The Florey Institute of Neuroscience and Mental Health at the University of Melbourne, Professor Shabanpoor is leading a cutting-edge project titled Development of a combination therapy for targeting protein aggregation and neuroinflammation as a next generation therapeutic for MND. By combining three innovative drug technologies into one powerful treatment, this project aims to tackle two of MND’s most damaging features. Toxic protein buildup and inflammation. 

Despite decades of research, MND remains one of the most difficult diseases to treat, leaving many in the community with limited options. But now, thanks to this ambitious research, there’s hope a new, effective approach to slowing or even stopping MND in its tracks is on the horizon. 

Targeting two key features of MND

The project focuses on developing a single therapeutic drug that can do two critical jobs: prevent harmful protein buildup inside motor neurons and reduce damaging inflammation. 

“These two features—protein aggregation and inflammation—are some of the most common and harmful effects of MND,” explains Associate Professor Shabanpoor. “Rather than targeting one or the other, we want to tackle both at the same time with a unified treatment.” 

Merging three powerful technologies 

What makes this project truly innovative is the way it integrates three advanced drug technologies: 

• Antisense gene therapy to correct genetic errors, 
• Therapeutic peptides to reduce toxic protein buildup, 
• And a brain drug delivery platform to ensure the treatment reaches the affected neurons effectively. 

“All three technologies have already shown promise individually,” says Associate Professor Shabanpoor. “Now, for the first time, we’re merging them into a single therapy designed specifically for MND.” 

A paradigm shift in drug development 

Historically, MND treatments have focused on just one aspect of the disease at a time. An approach that hasn’t delivered major breakthroughs. Associate Professor Shabanpoor’s project takes a combination therapy approach, addressing multiple disease mechanisms simultaneously. 

“Our goal is to shift the paradigm in MND drug development,” he explains. “We believe that by combining the strengths of multiple treatments into one, we can create a much more effective therapy.” 

This innovative work would not be possible without the generous support of FightMND . 

“As government funding for science continues to decline, the support from FightMND is absolutely essential,” says Associate Professor Shabanpoor. “Their 2024 Drug Development Grant gives us the resources we need to take this project to the next stage and ultimately move closer to a real treatment for people living with MND.” 

Associate Professor Shabanpoor also emphasises the crucial role everyday Australians play in making this work happen. 

“I want to sincerely thank the donors and supporters of FightMND. Your generosity enables researchers like us to pursue bold ideas and develop treatments that could change lives. Together, with science, support and generosity, we’re working towards a future where MND no longer takes so much.”  

Join the Fight Against MND this Big Freeze 11 

This Big Freeze, FightMND is calling on the Australian community to unite and live it forward for those who can’t. You can support life-changing research by purchasing your Big Freeze 11 Beanie at Coles, Bunnings, select Shell Reddy Express stores, or online at fightmnd.org.au. 

Become part of the FightMND Army and show your support to the cause. Wear your Beanie proudly, organise events or get creative with ways to “freeze” MND. Don’t forget to share your actions on social media by tagging @fightmnd and using the hashtags #BigFreeze11, #LiveItForward, #TeamUpForBigFreeze11, and #FightMND. 

This Big Freeze, Let’s live it forward for those in the fight against MND. Together, we can make a lasting impact. 

 

Identifying MND signatures using MRI: Dr Thomas Shaw’s mission to revolutionise MND diagnosis 

Motor neurone disease (MND) is a devastating condition. It robs people of their ability to move, speak and, eventually, breathe. Despite advances in medical science, diagnosing and tracking the progression of MND, remains a challenge. Someone determined to change this is Dr Thomas Shaw, a researcher with the School of Electrical Engineering and Computer Science – University of Queensland and a FightMND IMPACT Grant recipient. 

A new way to understand MND 

One hypothesis for why MND develops centres on an imbalance of neurochemicals in the brain. Advancements in MRI technology in the last 5 years means these chemicals can be measured with greater speed and across the brain. Not only can MRI detect neurochemicals, but it can also map specific regions of the body onto the brain itself. 

Dr Shaw’s latest project, the MetaBody Map, seeks to merge these capabilities. This is a revolutionary technique that aims to pinpoint neurochemical changes within mapped regions of the brain in MND patients. By packaging this method into easy-to-use software for clinicians, Dr Shaw and his team hope to deliver new biomarkers to improve disease diagnosis and progression tracking. 

Why this research matters 

Diagnosing MND is a long and uncertain process. Often delaying crucial treatment. On reason for this is the lack of reliable biomarkers that confirm the presence of the disease. 

Dr Shaw’s research uses magnetic resonance spectroscopy. This is a powerful imaging technique tracking tiny molecules known as metabolites. These chemicals change in the progression of MND – for example, they have shown that patients experience an uptick of certain metabolites as the disease is about to progress. Mapping them could unlock vital new insights into the disease. In the past, the method has restricted imaging to small brain regions. Dr Shaw’s approach allows spectroscopy to scan nearly the entire brain. This gives a comprehensive picture of the disease’s impact. 

The MetaBody Map combines functional brain imaging with metabolite tracking. It aims to reveal the regions affected by MND, such as those linked to the hands, arms, feet, and face. This breakthrough could provide medical professionals with specific biomarkers, leading to earlier diagnoses and improved patient outcomes. 

Bringing innovation to patients 

Dr Shaw’s research has come to life thanks to the collaboration of experts across psychology, engineering, and neuroscience. The team’s goal is to integrate the MetaBody Map into freely available clinical software. Ensuring rapid adoption and benefits for patients worldwide. With optimisation reducing MRI scan time to 20 minutes, the technique is already tailored for practical use. 

With the support of a FightMND IMPACT Grant, Dr Shaw’s team has brought in Dr Harriet Dempsey-Jones, an expert in sensory perception and body mapping, to contribute to the project full-time. The funding will help move the project from research to clinical applications. Making advanced imaging tools accessible across hospitals using standard MRI technology. In turn, helping to improve time to diagnosis. 

Why your support matters 

Having dedicated over five years to MND research, Dr Shaw understands the impact the disease has on patients and their family and friends. While we are making progress, treatments are limited, and a cure remains elusive. Investment in pioneering research remains the key to changing this reality. 

Support from organisations like FightMND helps the MND research community move towards breakthroughs. These breakthroughs could transform diagnosis, discover treatments and find a cure. The more people continue to support MND research, the closer we move toward solutions that offer hope and progress for those affected. 

Help FightMND invest in vital research during Big Freeze 11 

This Big Freeze, FightMND is daring the Australian community to come together and live it forward for those who can’t. Show your support by grabbing your Big Freeze 11 Beanie from Coles, Bunnings, select Shell Reddy Express stores, or online at fightmnd.org.au. 

Join the FightMND Army and show us how you’re living it forward. Snap photos with your Beanie, host events, or come up with creative ways to freeze MND. Share your efforts on social media. Tag us @fightmnd and use the hashtags #BigFreeze11, #LiveItForward, #TeamUpForBigFreeze11, and #FightMND. 

Let’s live it forward this Big Freeze 11. Together, we can defeat the Beast. 

 

Ron’s story: Strength, love and the power of an unbreakable spirit 

On June 22, 2023, Ron Hobden, affectionately known as Hobbo to his mates, received a diagnosis that would change the course of his life forever. A passionate rugby player, devoted husband to Annie and proud dad to Lizzie and Henry, Ron had always embraced life to the fullest. A week out from running a marathon, fit, strong and filled with plans for the future, Ron had no reason to believe that anything would change.  

It was in a sterile neurologist’s office that he heard the words You have motor neurone disease. No cure. No treatment. Just a terminal diagnosis with a clock that suddenly began ticking louder than ever.  

“I remember Annie sitting beside me,” Ron explains, “and the way she tried to hold back her tears. I thought of our kids. Lizzie was three. Henry was one. How do you tell them their dad is dying?” 

In that moment, something in Ron shifted. Where others might have sunk into despair, he made a decision. Motor neurone disease would change his life, but it would not define it. It would never take his will to fight, his love for his family, or his ability to inspire. 

The brutal reality of MND 

Motor neurone disease doesn’t just change lives. It’s a thief. Ron, now lives in a body that no longer cooperates. He can no longer walk, hug his wife the way he used to, or hold his children in his arms.  

“My body is failing me, and there’s nothing I can do to stop it,” he details. “But the hardest part isn’t the physical loss. It’s watching what MND does to the people I love.” 

Annie, his wife and anchor, has become his carer. She balances being a mother, a homemaker, a nurse, and a source of strength. She does it all without complaint, but Ron sees the toll it takes. And yet, in the middle of such loss, there’s also an extraordinary beauty. 

“MND has taken so much, but it’s also shown me how deep love really runs,” he shares. “Annie is my hero. With Lizzie and Henry, they still see their dad, not the disease. They curl up next to me, tell me about their day, and remind me of what matters.” 

Finding strength in support 

For Ron, the unwavering support of his, family, his friends, his community and organisations like FightMND has provided glimmers of light. Two initiatives, which have received FightMND Care grant funding, A Friend’s Place and the Lived Experience Network have made a profound difference in his journey.  

“A Friend’s Place has helped our family cope with the emotional storm. It’s gentle, personal, and essential. I don’t want my memory to be a weight on my children’s shoulders. I want it to bring them peace,” he explains. 

“That’s what this place helps us achieve. It’s a place of compassion, where grief is met with understanding, and children are given the tools to cope. Not just survive, but thrive,” he reveals. 

The Lived Experience Network, meanwhile, has given Ron something he wasn’t sure he’d have again. A voice. 

“When you get diagnosed with MND, you feel powerless. But this program gives people like me a say. It lets us fight back. Not with fists, but with words, advocacy, and stories. It reminds us that our lives still matter. That we still have something to give. 

I’ve even written poetry for the first time since school. Not something you’d expect from a former rugby front rower!” 

Rugby, mateship and the power of community 

Rugby has always been a big part of Ron’s life. Since his diagnosis, that spirit of mateship has surrounded him. “It’s not what you say—it’s what you do,” he states. From his beloved Gordon club to rivals Norths, many with their own MND stories, Ron has witnessed extraordinary solidarity from the Rugby community. 

“But it’s the Gunnedah Red Devils I owe a massive shoutout,” he adds. “I’d retired six months before my diagnosis. But they’ve backed me every step since. This year, they’re donning Big Freeze Socks and Beanies for the second year to help fight the beast.” 

From backyard blitzes to fundraisers, it’s shown Ron that the values learned on the field, grit, mateship, heart, don’t stop at the sidelines. “What they’ve done gave me more than just a morale boost. It gave me hope.” 

Research, community and the road ahead 

For Ron, the importance of MND research cannot be overstated. 

“Research means hope,” he says. “It’s the only thing standing between despair and a better future. I know it might not save me, but maybe it’ll save someone else’s dad. Someone else’s partner. That hope is what keeps me going.” 

But to invest in research, FightMND needs the power of the Australian community rallying together to fight. For Ron, every Big Freeze Beanie worn is a powerful reminder that Australians are united in the fight. 

“It’s more than just a Beanie,” he explains. “It’s a symbol. It tells me we’re not alone. That people are with us. That Australians refuse to accept this disease as unbeatable. That’s what makes this fight winnable. Because people care.” 

Ron offers a heartfelt thank you to the researchers, carers, volunteers, the FightMND team, and everyone who’s taken up the cause. Because together, they are turning hope into action. And action into change. 

“And to Neale Daniher, there aren’t enough words. Neale is a beacon of strength, wisdom, and unshakable determination. He took the unimaginable and turned it into a movement that has changed the face of MND globally. He gave us a voice, a community, and a fighting spirit. He is, without question, a remarkable person and an utterly deserving choice for Australian of the Year. His legacy is extraordinary.”  

As Ron reflects “MND is a beast. But Australians don’t back down from a fight. Every time I see a Big Freeze Beanie is proof of that. It is proof that people care. That they refuse to accept that this disease is unbeatable. That they are willing to fight for people like me, for families like mine, for every future generation.” 

“This fight is not just about me and everyone with MND, it’s about Annie and every other partner who has had to be stronger than anyone should ever have to be. It’s about Lizzie and Henry and every child who deserves more time with their parent. But when we see those Beanies, when we see the entire country rallying behind us, it reminds us that we are not alone. It reminds us that people care. That people are willing to fight for a cure. Because ultimately it does take people. 

Motor neurone disease is brutal, but it will not win. We will beat it. Maybe not in my lifetime, but one day. And it will be because of every Big Freeze Beanie, because of every person who refuses to look away, who refuses to accept that this is just how it has to be. 

We will find a cure. We will change the future. And until that day comes, I will keep fighting.  

Because one day, we will win.” 

Live it forward for those in the fight this Big Freeze 

This Big Freeze help FightMND invest in vital research and projects supporting those living with MND, their families and their carers.  

Show your support by grabbing your Big Freeze 11 Beanie from Coles, Bunnings, select Shell Reddy Express stores, or online at fightmnd.org.au. 

Join the FightMND Army and be part of the movement. Wear your Beanie, host an event, or find creative ways to freeze MND—then share your efforts! Tag @fightmnd and use #BigFreeze11, #LiveItForward, #TeamUpForBigFreeze11, and #FightMND on social media. 

Let’s live it forward this Big Freeze 11. Together, we can beat the Beast.  

 

More than just a Beanie. It’s your superpower against MND

It’s not a cape, and it won’t give you laser vision. But the Big Freeze 11 Beanie is packed with serious power. The moment you pull it on, you’re suiting up. Not for a blockbuster battle, but for a real-world mission: taking down motor neurone disease (MND). 

This isn’t just a Beanie. It’s your symbol. Your rally cry. Your superhero signal in the sky. 

With every Beanie purchased you’re funding high-impact research, life-changing care and creating hope for those living with MND. You’re joining a league of everyday legends who’ve chosen to rise, rally and live it forward for those who can’t. 

Your Beanie. Your impact. 

$5,000 — A lifeline 

A gift of $5,000 – that’s 200 Beanies! – helps shift the fight in the battle against MND. Your support could contribute to training artificial intelligence systems to customise mechanical breathing support for people living with MND. Or it can provide a care package to a person living with MND to support them with help to clean and garden. Your generosity might even be connecting people to advocacy groups to ensure their voices lead the charge. 

You’re writing the future. 

Join the fight against MND this Big Freeze 11 

It’s time to rally together and take a stand against motor neurone disease (MND). FightMND is calling on Aussies everywhere to team up and live it forward for those who can’t during Big Freeze 11. 

Get your hands on a Big Freeze 11 Beanie at Coles, Bunnings, select Shell Reddy Express stores, or online at fightmnd.org.au, and become part of the movement driving vital research and care. 

Join the FightMND Army, wear your Beanie with pride, host a fundraiser, or come up with your own creative way to put MND on ice. Whatever you do, make sure to share it with the world by tagging @fightmnd and using the hashtags #BigFreeze11, #LiveItForward, #TeamUpForBigFreeze11, and #FightMND. 

This Big Freeze, every Beanie counts. Every action matters. Together, we can beat the Beast. 

Big Freeze 11 rolls into Flinders Street Station  

The Big Freeze 11 has arrived and FightMND is charging full steam ahead in the battle against motor neurone disease (MND). To celebrate, two Aussie legends have donned their brand new Big Freeze 11 Beanies – FightMND Co-founder Neale Daniher and the iconic Flinders Street Station. Yes! We found a giant inflatable Beanie big enough for Australia’s oldest and, in our opinion, most beautiful station. 

Honouring FightMND Co-founder, patron and 2025 Australian of the Year, Neale Daniher AO, this year’s launch celebrates Neale’s groundbreaking contributions and the incredible strength of the Australian community. Year after year, Aussies have united to fight the Beast that is MND, showing unwavering support and solidarity. 

For Big Freeze 11, FightMND is daring Australians to live it forward. Inspired by Danish philosopher Søren Kierkegaard’s wisdom “Life can only be understood backwards, but it must be lived forwards”, this philosophy resonates deeply with Neale Daniher’s reflections in his book When all is said and done. As Neale poignantly wrote, “I understand the wisdom of this, but right now I don’t have much forward left.” 

Living it forward means seizing the moment and daring to craft a better future for those still in the fight and in memory of those who can no longer fight. It’s a call to action that inspires courage, determination, and hope in the face of MND. 

The launch included our wonderful major campaign partners Coles Bunnings, AFL identities, players from Melbourne and Collingwood football clubs, stakeholders, partners, board members and supports. Each one turning it out to officially launch the Big Freeze 11 campaign ahead of the King’s Birthday clash when the Demons host the Magpies. 

FightMND extends its thanks to the incredible partners who helped bring the Big Freeze 11 Beanie to Flinders Street Station. Metro Trains Melbourne, Element Rigging, RISING Festival, Clement Stone Town Planners, Heritage Victoria, the Centre for Design and Innovation at Swinburne University, Department of Transport and Planning, the City of Melbourne and Giants Inflatables. 

This year FightMND is back to freeze the nation with activities planned right across this great southern land. 

Founded a decade ago by Neale Daniher AO, Dr Ian Davis, and Pat Cunningham, FightMND’s original Big Freeze launched on Queen’s Birthday in 2015. Though Dr Davis and Pat’s wife Angie Cunningham have since passed away due to the disease, their legacy lives on in the continued fight against MND. FightMND continues to fund groundbreaking research into cure and care for those living with this devastating condition. 

With more than $115 million invested into MND research and support projects, FightMND has made extraordinary progress in helping those affected by MND and their families. This incredible journey is powered by the generosity of the Australian public, partners, and government support. While significant strides have been made, the summit of this Everest lies ahead, and your support is critical to help reach it. 

Grab Your Beanie and Join the Fight 

The BIG Big Freeze 11 Beanie will remain at Flinders Street Station until 8 May. Volunteers will be selling Beanies at Flinders Street Station weekdays during peak hours.  

If you can’t get to Flinders Street Station, don’t worry! You’ll still get a chance to support this incredible cause. Big Freeze 11 Beanies are available from 7 May from Coles, Bunnings, select Shell Reddy Express stores, or online at fightmnd.org.au  

Show us how you’re living it forward this Big Freeze. Snap photos with your Beanie, host events, or come up with creative ways to freeze MND. Share your efforts on social media by tagging @fightmnd and using the hashtags #BigFreeze11, #LiveItForward, #TeamUpForBigFreeze11, and #FightMND. 

Let’s live it forward this Big Freeze 11. Together, we can defeat the Beast. 

Creating Australia’s first MND Care Guideline 

Health guidelines play an important role in shaping the quality of healthcare in Australia. They aim to promote best practice and ensure everyone has the same standard of healthcare, regardless of where they live. 

Today, more than 2,000 Australians live with motor neurone disease (MND). However, the absence of national care guidelines means the standard of care for those living with MND can vary widely between urban and regional communities and even between states. This disparity can leave patients and their families navigating a fragmented and inequitable healthcare system.  

To help address this, FightMND has invested $2 million into the University of Adelaide’s Australian MND Guideline Development Project. Led by Health Evidence, Synthesis, Recommendations and Impact (HESRI) Unit Director, Professor Zachary Munn, this two-year initiative will help address key gaps in MND care. It will also support the creation of the Australian MND Guideline, Australia’s first evidence-based, nationally consistent guideline for MND care. 

Best-practice care is crucial for improving quality of life and managing symptoms in the absence of a cure. The Australian MND Guideline will offer standardised, evidence-based recommendations, supporting healthcare professionals, individuals living with MND, carers and policymakers. The project represents a significant step towards ensuring consistent, high-quality care for all Australians affected by the disease. 

Central to the development of the Guideline is the Guideline Development Panel. Composed of clinicians, researchers and people with lived experience of MND, the panel will provide vital insight and play a pivotal role in crafting the recommendations. Co-chaired by Professor Steve Vucic of Concord Hospital and Jo Whitehouse of MND Victoria, the panel will ensure the guideline is practical, implementable and responsive to the needs of the MND community. 

Work on the Australian MND Guideline will start in May 2025 and is due for completion in 2027. For more information about the Project, visit the Australian MND Guideline Development Project website.  

Help FightMND support those living with MND 

Motor neurone disease (MND) touches lives in profound and often devastating ways, affecting not only individuals but their families, caregivers and communities. At FightMND, we are committed to standing with those impacted by this disease by funding care research projects that make a difference, like the Australian MND Guideline Development Project. 

By focusing on care-centred research, we complement the work of state MND associations and organisations nationwide dedicated to improving the quality of life for MND patients.  

However, this fight needs more than just research. It needs your support. Your generosity helps us:  

• Fund essential care-focused research that drives the development of better MND care practices  

• Improve the accessibility and quality of care for MND patients across the country  

• Raise awareness of MND and its widespread impact on families  With your help, we can continue to push for progress and fight to defeat the Beast of MND. 

How Geelong does the DIY Big Freeze (and you can too!) 

There is a chill in the air and the icy excitement is building. It’s time for DIY Big Freeze season! Are you ready to make a splash, but need some help getting started? Don’t worry! we’re here to help. We’ve got the tips and tricks to help you bring your DIY Big Freeze plans to life. 

Whether you’re a seasoned slider or a first-time organiser, we’ve got the tips and tricks to help you make your DIY Big Freeze event unforgettable. 

Wondering where to start? Look no further than the Geelong DIY Big Freeze. What began as a small local initiative has now become one of the most anticipated days on the Geelong calendar. With three successful events under their belt, the Geelong team is gearing up for their fourth year of icy plunges, community spirit, fundraising, and non-stop fun. 

To help you kick off your own DIY Big Freeze, we turned to the Geelong team for their insider tips. Ready to bring your community together for a cause while creating a truly memorable experience? Here’s how to make a splash: 

1. Start strong. Build your Dream Team 

Every successful event starts with a strong foundation. In this case, your team is the backbone of your event’s success. Think of it as the ice machine keeping everything cool and smooth.  

• Build your core committee: Start with a close-knit committee of 5-6 people. These are your decision makers, your planners, your “lets-make-this-happen” crew.  

• Draw on volunteer power: Once the buzz starts, volunteers will flock like penguins to the ice! Make the most of their enthusiasm by giving them roles that match their skills, whether it’s setting up the slide or selling Socks and Beanies on the day. 

2. Roles that shine. Play to people’s strengths  

A well-organized team thrives when roles are clearly defined and tailored to each person’s talents. 

• Assign key roles: Identify important responsibilities, like social media management, slide structure coordination, and event logistics. This ensures no snowball is left unturned. 

• Empower your team: Let people own their roles. For example, have a tech-savvy teammate run your social media, while your ultra-organized friend ensures every logistic detail is nailed down. When people take pride in their roles, they’re more motivated to deliver their best. 

3. Choose Sliders that make waves 

If you’re planning a slide or dunk tank as part of your event who you ask to take the plunge can be a big draw for your event. The right sliders can be your event’s secret weapon. Make sure you grab attention and open doors with strategic choices. 

• Local celebs and dignitaries: Start strong with recognisable figures like your local MP or Mayor. Maybe consider reaching out to local news readers. Not only do these Sliders create buzz and credibility, they can also help provide guidance around council permits and other requirements. 

• Community stars: Mix it up with influencers and local personalities who’ll bring energy and excitement to the event. Who wouldn’t love to see their school principal take an icy plunge! Bonus points if they come dressed in quirky costumes for maximum fun! 

Every DIY Big Freeze event is unique. Think about what it is that sets your community apart and work to that. With the right team, clear roles and some star sliders, your event is sure to make a splash! Let your creativity shine and enjoy the journey of pulling it all together!  

Get behind the Geelong Big Freeze! 

A huge thanks to the Geelong DIY Big Freeze team for sharing their tried-and-true tips! Don’t miss this year’s event: Geelong Big Freeze 4 is happening on 1 June at 12:30 pm at St Mary’s Anthony Costa Oval. For more details, visit their fundraising page and support this incredible initiative. 

Geelong DIY Big Freeze 2024

Dare to Do and bring the Big Freeze to your Community  

This year, FightMND is challenging Aussies to dare to do and join the fight against motor neuron disease (MND). Whether it’s hosting your very own DIY Big Freeze, joining a club’s Community Round, or donning your Big Freeze 11 Socks, every action counts. 

 

Get involved with the MND community

Lived experience of motor neurone disease (MND) is the personal knowledge and understanding that comes from living with MND or caring for someone who has it. It focuses on their experiences, thoughts, challenges and how they cope with the disease. It also covers their journey through health, disability or aged care services and how they interact with others in the community.  

What is the National MND Lived Experience Network? 

The National MND Lived Experience Network (LEN) launched in June 2024 with support of MND Australia and FightMND. Its aim is to increase engagement between people with lived experience and professionals working in the field.  

The LEN includes over 130 members from across Australia. It includes people living with MND, genetic carriers, and current, or former, carers. Each member brings their own insights and experiences of MND. In turn, creating a forum to improve understanding and support for those affected by MND.  

How LEN members get involved? 

People with lived experience bring valuable, firsthand insights into what it’s like to live with, or care for, someone with MND. Including them in activities affecting them and their loved ones is important. Their involvement ensures real-world challenges, needs and issues are addressed. This can lead to the creation of more effective interventions and policies.  

“Personal stories and experiences bring data and research to life and help connect the dots in our work.”  

(anonymous, MND researcher) 

LEN members are passionate about supporting projects related to: 

• care and support 
• raising awareness of MND and its impact on individuals and families 
• advocacy efforts 
• development of vital resources and information 
• advancing research. 

Since September 2024, professional groups have submitted more than 40 requests to engage with the LEN. Of our 130 members, 46% have participated in at least one activity. Members have made 200 contributions in 6 months. This involvement has help amplify the voices of those with lived experience.  

The LEN members recruited for our focus groups were fantastic, they were open and willing to share their experience.”  

(anonymous, professional group) 

The activities LEN members have participated in include: 

• online focus groups 
• working groups or committees 
• co-designing new projects or programs 
• being interviewed for media releases 
• helping to create or review educational, clinical, or information resources 
• participating in research studies 
• completing surveys to gather data 
• supporting applications for new grant funding. 

Early outcomes show that the LEN is making a meaningful difference for its members. It’s empowering those with lived experience to take a more active role in the MND community. It’s also fostering stronger connections between those with lived experience and professionals. In turn, this is creating valuable partnerships to build better understanding and support. 

“It’s a journey none of us choose but I am getting significant joy from being involved and for my contribution being valued….it allows my lived experience and my past professional experiences to contribute to further understandings of the MND journey.” 

(anonymous, LEN member) 

“I get to link with so many great people, professionals and people with lived experience.” 

(anonymous, LEN member) 

Connect with the LEN 

Are you an industry professional wanting to make a real difference in your work? Enrich your work by engaging with people with firsthand experience of MND. Submit a LEN engagement request on the MND Australia website to get started.  

Bracelets for breakthroughs: Hope’s story

Combining her love of football with her determination to create change, 11 year-old Hope Blythe is taking on the fight against motor neurone disease (MND) her way. A passionate Collingwood supporter, Hope has turned her creativity and focus into a mission to raise funds for FightMND. Reminding everyone that every act of kindness can have a huge impact in the fight against MND

The drive behind Hope’s fundraising comes from her family tradition. Every year, Hope, her twin sister Olivia, and her Mum, who are both Melbourne supporters, attend the Melbourne vs. Collingwood game. A match, and a tradition, that holds special significance to Hope and her whole family.

Hope has a special connection with Neale Daniher, someone she refers to as “one of her boys”. Her passion for AFL and its players runs deep. So much so that she often emulates on-field injuries, arriving at school with a moonboot, sling or bandage, depending on what she’s seen during each match. But, when it comes to MND, she sees it differently.

“Neale has done nothing to deserve this,” she explains, “and it could happen to anyone. We need to find a cure”.

Communicating in her own unique way, Hope uses her creativity and actions to make her voice heard. She began making bracelets as a way to combine her love of footy and her drive to raise awareness for MND. Despite facing challenges while tying the knots, Hope insists on doing every step herself. “If I don’t finish it, I haven’t made it,” she shares. A testament to her dedication.

Her bracelet making has captured the support of her school and community. Many parents have donated to get bracelets for their children as keepsakes. Each bracelet becomes a small but meaningful symbol. A way to honour those affected by MND and remind others of the importance of the cause.

For Hope, this journey isn’t just about raising funds. It’s about connection. Crafting bracelets opens conversations about a topic she cares deeply about. Her mum, Kimberley, reveals that while Hope does not talk much, her creativity and efforts speak louder than words. If given the chance to meet Neale Daniher, Hope would stand beside him as a show of strength. Or, she’d break the ice with a playful request to have a go on the Big Freeze slide!

Hope’s efforts are a shining example of how even the smallest actions can create ripples of change. With 87 bracelets and counting, she’s proving that passion, creativity, and determination have the power to make a difference. Through her work, she’s helping drive awareness, spark conversations, and bring us closer to a cure. 

Grab your Beanie and live it forward during Big Freeze 11

This Big Freeze we’re calling on all Australians to live it forward and stand together in the fight against MND. Every Beanie sold helps fund critical research and care initiatives, supporting those living with MND and the families who stand by them.

What are you waiting for? Be part of Big Freeze 11 and show your support by getting your Beanie today from Coles, Bunnings, select Shell Reddy Express stores or via the FightMND website.

Looking for other ways to support? Join the FightMND Army! Whether you wear your beanie with pride, host a fundraising event, or find your own way to freeze MND, every action counts. Don’t forget to share your support tagging @fightmnd and using #BigFreeze11, #LiveItForward, #TeamUpForBigFreeze11, and #FightMND across social media.

Together, we can change the future of MND. Let’s live it forward and make an impact this Big Freeze 11!