Helping people with MND stay mobile: Research targets walking and independence

For people with motor neurone disease (MND), the loss of mobility is a major change. As MND progresses, muscles weaken, making activities like walking harder. Daily tasks like going to the kitchen, exercising and shopping become more difficult or even impossible. Independence fades away. 

Mobility is key to independence and quality of life. However, researchers know little about how walking and movement change in people with MND. Current assessments often miss early warning signs. Furthermore, doctors lack tools to track the disease’s progression. This leaves people with MND with few evidence-based options to maintain safe movement. 

At The University of Queensland, Associate Professor Taylor Dick from the School of Biomedical Science is determined to make a difference. Working within the UQ Centre for MND Research, an internationally recognised centre focused on advancing collaborative research and better care for people with MND, she is investigating how the condition changes the way people walk. Backed by a 2026 FightMND Care Research Grant, the project will also examine how emerging technologies could help people stay mobile for as long as possible. 

“Our project tackles one of the most visible and distressing effects of MND: the loss of independent mobility, especially walking,” she explains. “Our goal is simple yet powerful: to help people with MND remain mobile, independent, and confident for as long as possible.” roving the lives of people living with MND today while the search for a cure continues. 

How MND affects the ankles 

Most people don’t think about their ankles when they walk. But for those with MND, the ankle reveals important information. 

“Our recent research showed that people with MND lose a lot of ankle ‘push-off’ power when walking. It’s more than a two-fold decrease compared to those without MND,” explains Taylor. “This early ankle issue seems to drive slower walking, fatigue, and instability.” 

This finding is vital. Doctors have known MND affects mobility, but they haven’t grasped the mechanics behind it. Traditional assessments focus on broad measures like walking speed. This overlooks early warning signs. 

Associate Professor Dick’s method goes deeper.  Her team studies joint movement patterns and muscle power to see how movement breaks down as the disease advances. 

Wearable technology offers new possibilities 

Understanding the problem is the first step. Through her research, Associate Professor Dick’s team is also testing a solution. Lightweight robotic ankle exoskeletons. 

These wearable devices offer timed support while walking. They target the area where people with MND lose strength. Early results are promising. Participants walk faster and report high satisfaction with the technology. 

“This project brings movement into focus,” says Taylor. “We will use advanced motion analysis and wearable sensors to identify detailed ‘movement signatures’ of disease progression. We will test lightweight robotic ankle exoskeletons to see if they can help people move safely and with less effort.” 

This project is the first of its kind in Australia and among the first globally. It combines lived experiences, high-resolution biomechanical analysis and wearable robotic technology for MND. 

How this research can change MND care 

The research has three main goals: 

• identify early changes in walking that show disease progression 
• find better ways to monitor mobility in clinical care  
• assess new wearable aids that can help maintain walking and reduce falls. 

The research will generate the most detailed biomechanical dataset of walking in MND to date in Australia and globally. These findings could improve how mobility is measured in both clinical trials and routine care, potentially leading to monitoring tools that could be used in clinics or even at home. 

How community support drives research 

This research wouldn’t be possible without community support. The FightMND Care Grant provides the critical resources needed to engage directly with people living with MND, conduct detailed gait analyses across different stages of the disease, and trial the wearable ankle exoskeleton technology in real-world contexts. 

“FightMND’s investment signals that mobility and quality of life matter deeply,” Taylor notes. “This funding supports research that may not yet have large commercial backing but has enormous impact potential for people living with MND today.” 

Motor neurone disease remains a devastating disease with limited treatment options and no cure. But research like this offers real hope for improving quality of life today while working toward better treatments tomorrow. 

“Donations to FightMND mean I can dedicate my time to finding ways for people living with MND to move safely and independently for as long as possible,” says Taylor. “Every contribution helps us push forward—whether that’s discovering new movement biomarkers, refining assistive technologies, or improving quality of life for families facing this disease. Continued public support is what drives momentum. It turns hope into action.” 

Creating hope through research 

Projects like Associate Professor Taylor Dick’s build on the remarkable progress already made in Care research. Australia is now recognised as a global leader in MND research. This is because of brilliant minds, bold ideas and unwavering community support driving us forward.  

Want to learn more about the projects receiving funding and the progress being made? Visit Our Impact page to see how your support is making a real difference. 

FightMND invests nearly $3.1 million into Care Grants in 2026 

At FightMND, we know that while the search for a cure is vital, people living with motor neurone disease (MND) need better support today. That’s why we invest in research that not only seeks a cure but also improves care for people living with MND right now. 

In 2026, we’re investing nearly $3.1 million across 21 grants supporting Care research and projects that benefit Australians affected by MND. 

This funding supports: 

• $1,050,617 across 5 Care Research projects 
• $1,209,668 across 7 projects focused on improving and innovating MND Care 
• $835,605 across 11 equipment grants through the inaugural Coles Care Grant 

By investing in these research and support projects, FightMND is committed to improving the lives of people living with MND today while the search for a cure continues. 

Meet some of the 2026 Care grant recipients 

This year, FightMND is supporting a variety of projects focused on improving the care of Australians living with MND. Below are just some of the incredible projects receiving funding in 2026. In the coming weeks, we’ll share more information about other projects supported by FightMND’s Care Grants. 

Care Research Grant: Improving quality of life with assistive technology 

Led by Associate Professor Natasha Layton at Monash University, this project will study the use and benefits of assistive technology (AT) for people living with MND. By understanding what equipment works best and when it should be provided, the project will give practical guidance to healthcare teams and the MND community, helping people live more comfortably and independently. 

Care Support Grant: A national online community for people affected by MND 

Led by MND Australia, this project will establish a national online forum through MND Connect, serving people living with MND, their families, carers, and professionals. The forum will encourage peer support, knowledge sharing, and collaboration across the country. The expected outcome is a stronger, more empowered MND community with rapid access to guidance, support, and connection. 

Care Research Grant: Understanding day-to-day secretion challenges in MND 

This project, led by Rachel Nolan from Northern Health, will interview people with MND and their primary carers to capture their lived experience of managing saliva and phlegm. The findings will highlight barriers and enablers to effective management, guiding clinics to deliver more practical, person-centred care. The outcome will be improved quality of life and confidence for people living with MND and their carers. 

Introducing the Coles Care Grant 

This year, FightMND is partnering with Coles to award the inaugural Coles Care Grant. The grant supports research or projects designed to assist Australians living with MND. 

In its first year, the grant is funding 11 equipment grants across Australia, empowering organisations to invest in medical equipment, assistive technologies, care packages, and support services that help people live with greater comfort, dignity, and independence. 

Inaugural recipients of the Coles Care Grant include: 

• Motor Neurone Disease Association of Western Australia 
• Calvary Health Care Bethlehem 
• MND NSW 
• Barwon Health 
• Motor Neurone Disease Association of South Australia Inc 
• Motor Neurone Disease Association of Queensland 
• Motor Neurone Disease Association of Tasmania 
• MND Victoria 
• Flinders Medical Centre 
• MND and Me Foundation 

The Coles Care Grant reflects a shared commitment to delivering practical, meaningful support that improves quality of life for Australians living with MND. 

Creating hope through research 

Investment in Care research and programs like these helps enhance the quality of life for Australians living with MND, their families, and the carers who support them. These projects build on the incredible progress being made in the fight against MND. 

Want to learn more about how your support is helping in the fight against MND? Visit our Impact page for more information. 

Ready to Choose Fight? Jan’s five tips for DIY Big Freeze success 

Maybe you’ve never run a fundraiser before. Maybe you have, but never a DIY Big Freeze. Either way, you’re thinking about taking that step to Choose Fight. And that’s exactly what we need. Here’s what I want you to know: you’re not doing this alone. By taking this first step, you’re already part of something much bigger than yourself. 

Since the start of FightMND, I’ve seen hundreds of DIY Big Freeze events pop up across the country. Over the last nine years I’ve even had a hand in fundraising myself with the Shady Ladies; a group of my friends committed to taking the fight to the Beast that is MND. What has really struck me over this time is seeing the different DIY Big Freeze fundraisers. From someone’s backyard to a local community centre, from a creative challenge dreamed up with friends to an event I never saw coming. Every single one had this amazing energy. People showing up together, laughing together, united around a shared purpose. 

That’s the magic I’ve discovered. It’s not about size or perfection. It’s about connection. It’s about knowing that when you bring people together to beat the Beast, you’re tapping into something real. Every event, no matter how small, moves us closer to real change. 

So, if you’re ready to join the FightMND Army and host your own DIY Big Freeze, I’d love to share what I’ve discovered works. These tips come from real experience; both my own and what I’ve witnessed across our incredible community. No matter the size of your fundraiser, they’ll help you create an event that’s fun, meaningful and impactful. Let’s get into it. 

1. Get a committee or group together 

This is the most important tip I can give you. Don’t try to do this alone. Gather a small group of friends, family, colleagues or community members who want to help. Even just two or three people can make a huge difference. You can divide up tasks like promotion, logistics, day-of coordination and fundraising. It makes the workload lighter, the planning more fun and the event stronger. Plus, when things get busy, you’ll have people to lean on. It takes people to beat the Beast, and that starts with your organising team. 

2. Start Small. You Can Always Build Later 

If this is your first DIY Big Freeze, don’t feel like you need to go big. Start with something simple and achievable. Remember, you don’t have to build your own slide to make an impact. An ice bucket challenge, a relay race, a dress-up day or even a morning tea with merchandise sales can be just as fun and just as effective. The goal is to get started, learn what works and build confidence. You can always expand your plans next year.  

3. Set a date and decide what you want to do 

This is where it all begins. Pick a date. Decide on your activity. Everything else – venue, promotion, logistics — can be worked out after that. Once you’ve made those two decisions, register your event with us. Registration gives you access to even more support, resources and guidance from our team. It also means we can cheer you on and celebrate your efforts. Don’t overthink it. Just start. 

4. Make use of our resources and tools 

The FightMND team has created a whole toolkit to make your life easier. From promotional templates to planning guides to fundraising tips, it’s all there to help you streamline your event. Use what we’ve built. It’ll save you time and stress. And if there’s something you need that isn’t available, let us know. We’re always improving our resources based on what hosts need. You’re part of the FightMND Army, and we want to support you every step of the way. 

5. Use buy now, pay later and get expert help 

Worried about ordering merchandise or spending money upfront? We’ve got you covered. You can use buy now, pay later options, which means there’s no financial risk. Not sure how much to order? Our expert team can help you work out the right quantities based on your event size and goals. This makes hosting a DIY Big Freeze completely risk-free. You’ve got nothing to lose and everything to gain. 

Bonus Tip: Never be afraid to reach out 

Seriously. Whether you’re stuck on an idea, need advice, or just want a pep talk, contact our team. We’re here for you. You’re not in this alone. You’re part of something bigger. 

Register your DIY Big Freeze and you’re in the draw 

Here’s something extra special: when you host a DIY Big Freeze this year, you’ll go into the draw for a chance of a lifetime. One lucky person will get to experience the magic of the MCG’s famous Big Freeze Slide on King’s Birthday. All you have to do is register your DIY Big Freeze event with us. That’s it. You’re in the draw. 

But here’s what really matters: by hosting a DIY Big Freeze, you’re bringing that same magic to your own community. Whether it’s an ice bucket challenge, selling socks and beanies, or your own creative take on the iconic slide, every single thing you do fuels critical MND research and care programs. It supports Australians living with the Beast right now. 

This Big Freeze, unite your community. Make a splash. Bring us closer to a world free from MND. 

Ready to Choose Fight? Register your DIY Big Freeze today and join the FightMND Army. Learn how on our website.

A sister’s legacy: How Katrina brought a DIY Big Freeze to Airlie Beach 

When someone is diagnosed with motor neurone disease (MND), the effects can reach far beyond the person receiving the news. Families, friends, colleagues, sports clubs and neighbourhoods can feel the presence of the Beast.  

For Katrina Chaplin, her sister’s experience with MND inspired her to fight back. She rallied the Airlie Beach community, pulling people together for a DIY Big Freeze that highlighted the power of people and community. Through her passion and advocacy, the event not only raised critical funds for MND research but also helped raise awareness across Airlie Beach of the reality of the Beast and the urgent need to fight back.  

A family’s experience with MND 

Katrina’s journey with MND began with her sister’s diagnosis.   

“In July 2015, my sister broke her leg after falling from her bed. When her recovery didn’t progress as expected, she underwent further testing. That testing revealed that she had MND,” recalled Katrina.  

Katrina’s sister died on New Year’s Eve 2015. She was just 54 years and 2 days old. 

In March 2016, Katrina and her family learned that her sister had the mutated C9ORF72 gene. This is a common gene linked to MND.  

Of people diagnosed with MND, 90% are the only known member in the family to receive a diagnosis. This is known as sporadic MND. The other 10% of people diagnosed have inherited a mutation in a gene from a parent. This is known as familial MND. 

Genes are like instructions for the body. A change, or mutation, in a gene can make it more likely that someone develops MND. C9ORF72 is one of the most common gene mutations associated with familial MND.  

It is important to note that having a gene mutation increases your likelihood of developing MND. It doesn’t mean you will definitely get MND. Other factors, like your environment and other parts of your DNA, also influence the risk. 

“I’ve had my sister, my aunty, my uncle and two friends all die from motor neurone disease,” explained Katrina. “Mum was found to have passed on the faulty gene as well. It is an insidious disease.” 

With her deep connection to MND, Katrina was determined to make a difference. 

“After 10 years of my sister’s passing it was time to do something to raise money to find a cure.” 

A day that united Airlie Beach 

Katrina’s vision for the first Airlie Beach Big Freeze was a fun-filled day the whole community could enjoy.  

“It was important for me to create a day that was fun and inclusive for the whole family. As Neale often states, events like DIY Big Freezes are all about putting the Fun back into FUNdraising,” explains Katrina.  

The event had its own take on the Big Freeze Slide, with community members sponsored to take on the icy challenge, plunging down the Airlie Beach Big Freeze Slide.  

There was also a charity auction featuring sporting memorabilia including signed State of Origin, Brisbane Lions and Cowboys Women jerseys along with plenty of prizes supplied by local businesses. 

The success of the day was a true team effort: more than 20 volunteers gave their time, local businesses contributed uniforms, and photographers and videographers captured every moment, each one working together to ensure the day ran smoothly.  

Moments that showed why it matters 

Beyond the fun and thrill of the icy plunge, Katrina wanted to use the day to help raise awareness of MND across the Airlie Beach community. To do this, she invited Natalie and Bianca, two North Queensland locals living with MND to the event.  

A memorable moment for Katrina was when Natalie, who was awaiting confirmation of an MND diagnosis, met Bianca, who lives with the disease. The two women instantly connected, sharing stories, their fears and their hope for the future.  

“They both got so much out of talking to each other,” Katrina recalls. “Seeing them connect with each other was one of the most powerful moments from the day.” 

Not to let MND, or the uncertainty surrounding it, hold her back, Natalie participated in the day’s Big Freeze Slide. Wearing boxing gloves and a helmet, and the assistance of Katrina’s husband, Natalie ascended the stairs to the top of the Slide, before launching herself towards the icy pool below.  

“Even though she paid for it for a week, Natalie was determined to take on that slide,” said Katrina. “She told me later that it was worth it all just so she could reach her goal. Everyone in the audience was so supportive of her efforts.” 

Not to be overshadowed, Bianca and her team from Mackay arrived in style. Each wearing a F#$@% MND t-shirts, showing their solidarity and that the fight against the Beast stretches far beyond one town. 

“They’re now going to contribute to this year’s DIY, focusing their fundraising efforts in Mackay,” Katrina said. 

The power of community 

For Katrina, seeing the community rally behind the event was unforgettable. 

“People who came to just see the people slide ended up staying the whole afternoon because they had so much fun.” 

The experience also revealed the strength of the local community. 

“I knew there was something special about the Airlie Beach community but didn’t realise until this day and throughout the lead up, how wonderful the community is.” 

Bringing the DIY Big Freeze back for 2026 

Today, Katrina is looking ahead to the 2026 Airlie Beach DIY Big Freeze. When asked what advice she’d give to others thinking of hosting their own event, her answer was simple: just do it. 

“Treat your first DIY as a chance to learn and take lessons from,” she said. “You’ll be amazed at the support businesses and the community will give to your event.” 

Katrina’s other advice for newcomers looking to host a successful DIY Big Freeze? Plan early, promote widely, and make the most of every moment with your participants. 

“DIY Big Freeze events are all about people. From the sliders to the volunteers to the lived-experience community to businesses rallying behind the cause, everyone wants to contribute and help fight the Beast in any way they can.” 

For anyone considering hosting their own fundraiser, Katrina encourages reaching out and learning from those who have done it before. 

“There are so many people who are open and willing to share their tips and advice for hosting a DIY Big Freeze. If you’re ever unsure, just ask questions. We’re all here for the same outcome. We want to beat this insidious disease.” 

Choose Fight by hosting a DIY Big Freeze 

Like Katrina, you to can host a DIY Big Freeze in 2026.  

By hosting a DIY Big Freeze, you can bring the magic of the MCG’s Big Freeze to your own community. Whether it’s an Ice Bucket Challenge, selling Socks and Beanies, or your creative take on the iconic slide, every gesture fuels critical MND research and care programs supporting Australians living with the Beast. 

Joining the fight begins with a choice. I Choose Fight. Will you?  

This Big Freeze, unite your community, make a splash and bring us closer to a world free from MND. Learn how you can host a DIY Big Freeze on our website. 

Honouring Tony: Cahlia’s legacy of hope in the fight against MND 

Leaving a gift in your Will is one of the most personal decisions you can make. For some, it’s a way to honour a loved one. For others, it’s a chance to create a lasting change. To leave the world better than they found it. At FightMND, we know that every gift carries a story. A memory. A hope.  A reason. And each one brings us closer to a world free from motor neurone disease (MND).  

Cahlia is one person who has left a gift in her Will to FightMND. After losing her step-dad, Tony, to MND, she made a promise to help fight the disease that changed her family’s life forever. Here she shares her story and explains why she left a gift in her Will. 

When Cahlia met Tony 

It was 2007 when I met Tony. My mum picked me up from youth group one night and said she had someone she wanted me to meet and that he was hearing impaired. I practiced my sign language the whole way home. I knew the alphabet and practiced spelling “hello” right up until I got to the front door. Although I later learnt it’s just the good old faithful wave! 

From the moment I met him, I adored Tony. I remember jumping around the kitchen with mum, both of us knowing she’d found herself a winner.  

That one night turned into 17 beautiful years with Tony as my step-dad. He and mum soon got married, and he became the father figure I had longed for my whole life. That dream was made complete when he gave me the greatest gift. A little brother and sister, Savanah and Noah.  

Growing up with Tony as a step-dad was the best. He was cheeky to his core and the ultimate prankster. His laugh could carry for miles – and most of the time, it was at his own jokes that no one else understood. He loved rollercoasters and dragged me onto them against my will every chance he got. He’d invent ridiculous sign language just to make me look silly and he teased me more times than I could ever count.  

Tony was fun. But he was also kind. He gave the best hugs and never left you without saying “I love you”. He was driven and unbelievably talented at everything he put his mind to. He was everything a dad should be and I cherished every second I got to spend with him.   

Tony’s MND diagnosis 

Tony was just 46 when he was diagnosed with MND in 2023.   

He died in 2024.   

From diagnosis to final breath, all we got was 16 months.   

Before Tony’s diagnosis, I had very limited knowledge of MND. I knew about Neale Daniher, the blue Beanies and the Big Freeze. But I didn’t know what was in store for my family. I didn’t know that I’d have to watch Tony go from walking, to using a cane, to being wheelchair bound within months. I didn’t realise how aggressive this disease is, what it would take from Tony or how quickly it could progress.  

I remember Googling MND after that call with mum and seeing that on average, people live 27 months from diagnosis. So, when mum called me on August 20th, 2024 to tell me he had passed away, I remember sobbing “he was meant to have 27 months. We are supposed to have more time.” I couldn’t comprehend that not everyone gets that long.  

I didn’t get to say goodbye to Tony. At least not in the way I have wished everyday for the past year. I messaged him the morning he passed, to organise a time to go and see him. He had already lost his battle to MND by the time I messaged. I thought I had more time. I thought I had 11 months left to see him, to make memories, say good-bye. But if there is one thing I’ve learned, it’s that MND is a beast. It’s not just a saying or a marketing campaign. It’s a beast that can strike anyone, anytime.  

But my hope is that won’t always be true. That one day, we’ll have a cure. This hope is why I’ve decided to leave a gift to FightMND in my Will.  

Leaving a gift in her Will 

It’s strange to think about your Will at the age of 30. It almost feels silly and dramatic. At 30 you’re not thinking of the end. You’re not wondering how your assets will be divided, or how much you’ll accumulate before your last breath. But if losing Tony taught me anything, it’s that no one is promised tomorrow. So last year when I had the opportunity to create a free Will online through FightMND, it felt like a no-brainer.   

As I went through the steps, it asked if I wanted to leave a gift in my Will to FightMND or another charity and I’ve never ticked “yes” so fast. It was the easiest decision I’ve made; to leave behind hope for a cure, hope for my siblings and hope for every other family facing what we went through. To leave a legacy of change is the greatest gift I could give. Of all the things I might be remembered for, I hope it’s that I helped bring us closer to a cure, towards ending this disease and fighting the beast.   

Leaving a gift to FightMND in your Will means you’re not only helping to end the fight but also making a vow to create a lasting change. To leave the world better than you found it and to help ensure a cure is found within the next generation’s lifetime.   

There wasn’t a cure in Tony’s lifetime. But my hope is that there will be one in mine. That I won’t have to live in fear that my siblings carry the MND gene, or that another loved one will be taken too soon by this disease.  

I encourage you to join me in this hope – in making a difference that lasts beyond both our lifetimes. We don’t have to have all the answers, we just have to be willing to stand with those fighting. 

Including a gift in your Will 

Like Cahlia, you can help power the research aiming to defeat MND. Including a gift in your Will to FightMND is a meaningful way to drive breakthroughs in treatment, accelerate clinical trials and bring scientists closer to a cure in our lifetime. 

Until 30 March, you can create an online Will for free through EveryWill (formerly Gathered Here), Safewill or Willed, with all platforms offering simple, step‑by‑step guidance. Please note a subscription fee applies for Wills created on Safewill and Willed after 12 months. You can conveniently find more information on our website. 

For a confidential conversation about the impact your gift can make, contact our Gifts in Wills Coordinator, Eloise Shepherd, at [email protected] or (03) 7052 7004. 

Be inspired by Cahlia’s decision and help fuel the research that gives families hope for a future free from MND. 

An icy world record falls to launch DIY Big Freeze for 2026 

This morning 979 students from 12 schools across Melbourne descended on Xavier College in Kew. Their mission? To set a new world record for the largest simultaneous Ice Bucket Challenge and help raise awareness of motor neurone disease (MND).  

After the countdown, thousands of litres of icy water drenched students and participants in a wave of exhilaration. In that moment, Melbourne schools officially set a new world record. The achievement was confirmed by Helen and Faye from the Australian Book of Records, who presented FightMND’s Jan Daniher and Pat Cunningham with a certificate acknowledging the milestone.  

While the event created a memorable moment for participants, its primary purpose was to increase community awareness of MND; a disease affecting more than 2,700 Australians, as well as their families, friends and support networks. The gathering demonstrated the important role schools and young Australians can play in educating communities and supporting those impacted by the disease. 

For the Xavier College community, the event held a particular significance. Pat Cunningham, a Xavier alumnus and Co‑founder of FightMND, has been an advocate for MND research since his wife Angie’s diagnosis in 2013. The record attempt also honoured Jon Catania, a member of the Xavier College Class of 2017, who passed away from MND in 2025. The initiative recognised Jon’s legacy and highlighted ongoing national efforts to invest in research and improve the quality of life of Australians living with MND. 

The Ice Bucket Challenge also celebrated Melbourne’s sporting connections with the fight against MND. Tom McDonald, son of Melbourne Football Club legend Anthony McDonald participated in the challenge. Showing that this fight spans generations. McDonald was coached by Neale Daniher during his time with Melbourne. Neale’s own experience with MND has inspired national awareness and advocacy for increased funding for MND research and support services.  

FightMND would like to thank Xavier College for generously hosting and participating in the record attempt. We would also like to thank all the schools who helped make this record happen, including: 

• Catholic Ladies College, Eltham 
• Genazzano FCJ College, Kew 
• Kew Primary School, Kew 
• Loreto Mandeville Hall, Toorak 
• Loyola College, Watsonia 
• Marymede Catholic College, Doreen 
• Our Lady of Good Counsel Primary School, Deepdene 
• St Anne’s Primary School, East Kew 
• St Francis Xavier Primary School, Montmorency 
• Strathcona Girls Grammar School, Canterbury 
• Trinty Grammar School, Kew.  

FightMND would also like to thank our event supporters: 

• Bunnings for donating 1,500 buckets 
• Coles for 1,100 each of bottles of water and Fredo Frogs 
• Bells Ice for 200 bags of ice 
• Camprint for t-shirts at a discounted rate  

The record‑breaking Ice Bucket Challenge also reinforced the simplicity and accessibility of hosting a DIY Big Freeze event. With an idea, determination and participants to help beat the Beast that is MND, schools, workplaces, sporting clubs and community groups can create their own activities to raise funds, build awareness and show support for Australians living with MND throughout 2026.  

Quotes 

Shane Healy, Director of Operations and Community, Xavier College 

“Xavier seeks to form boys into ‘Men for Others’. To assist a wonderful charity such as FightMND is what the College is all about – we’re proud to support MND in this excellent endeavour.” 

Tom McDonald, Year 8, Xavier College, son of Anthony McDonald, former Melbourne Football Club player 

“My dad got coached by Neale. This is such a good cause and we all get around it as a family. We talk with Neale every year. We go down and have a dunk in the river and send it to Neale to show him that we’re doing the Big Freeze ourselves. It’s really exciting to be doing the DIY Big Freeze today, and all of my friends are ready to be involved.” 

Matt Tilley, CEO, FightMND 

“DIY Big Freeze means that you’re bringing the magic of what happens at the ‘G’ to your footy club, your workplace, your netball club or your school and raising money for us. That’s one part of it. But the big part is coming together and having fun and bringing some awareness around FightMND, what we do, the disease MND and what a terrible thing it does to families. 

But this year we have a little trick up our sleeve as well. One lucky duck is going to slide down the mega slide at the ‘G’ on King’s birthday weekend. And if you want to be that lucky duck, all you have to do is register and set up your own DIY Big Freeze and you’re in with a chance.”  

Jan Daniher, DIY Big Freeze leader, FightMND 

“How exciting is this – If you register for a DIY Big Freeze, you go into the draw to go down the Big Freeze Slide at the MCG on King’s Birthday. Now, this is a once in a lifetime opportunity. We’re so excited and we can’t wait to see who gets to go down that famous Slide.” 

“Seeing the community rally behind this cause gives me so much confidence for the future of this fight. Their willingness to step forward shows the power of people. When we come together, families affected by MND are reminded that they are not facing this alone.  

This is exactly why DIY Big Freeze was created. To bring people together and build momentum for change. Every DIY Big Freeze, big or small, helps build hope. Each one brings us closer to better treatments, better support and a world free from MND.” 

Host a DIY Big Freeze for your chance to go down the Big Freeze Slide 

This year one lucky person will get the chance of a lifetime! To go down the famous Big Freeze Slide on King’s Birthday. All you have to do is register your DIY Big Freeze for your chance to go into the draw to win.  

By hosting a DIY Big Freeze, you can bring the magic of the MCG’s Big Freeze to your own community. Whether it’s an Ice Bucket Challenge, selling Socks and Beanies, or your creative take on the iconic slide, every gesture fuels critical MND research and care programs supporting Australians living with the Beast. 

Joining the fight begins with a choice. I Choose Fight. Will you?  

This Big Freeze, unite your community, make a splash and bring us closer to a world free from MND. Learn how you can host a DIY Big Freeze on our website. 

Swimming for Rita: Madoc’s mission to fight MND 

For Madoc Lanfear-Appleby, swimming is more than a sport. In 2025, it became a way for him to honour his family, raise awareness and help fund important research into motor neurone disease (MND). 

The challenge Madoc set himself was no small feat. “I have always wanted to raise funds for MND and I thought attempting to complete two solo Rottnest Channel swims in a month would be a good challenge,” he explained. A demanding physical challenge. But one driven by deep personal connection.  

The fight against MND sits close to Madoc’s heart. In June 2015, his Nanna, Rita, was diagnosed with progressive bulbar palsy. An aggressive form of MND, it primarily affects speech and swallowing. It has a life expectancy of just six months to three years. Rita passed away on 22 December 2016, just 18 months after her diagnosis.  

Madoc remembers Rita as a passionate swimmer, an active and social person who loved being out in the world with others. Losing her independence was one of the hardest parts of the disease. “The hardest thing for Rita was losing the ability to talk, walk, and swallow,” he said. 

Being confined to a wheelchair and relying on others was mentally tough for someone so independent. Yet even as MND took so much from her, Rita refused to let it take everything. 

“When Rita lost her speech, she started communicating through handwritten notes. She was so determined that she mastered the art of using an iPad and started using social media to communicate and connect with people.” 

It was Rita’s unwavering determination that Madoc held onto. The fuel that kept him training hard for the challenge ahead. 

A challenge years in the making 

Reflecting on his goal, it’s clear Madoc wanted a challenge worthy of the determination Rita showed every day. “Swimming to Rottnest seemed like the right one,” he explains.  

The journey hasn’t been simple. His plan for two solo swims in a month back in 2024 was interrupted when severe weather forced the Rottnest Channel Swim to be cancelled mid-race. Stepping back from competitive swimming afterward, Madoc shifted his focus from racing to resilience. “I’ve been able to complete three solo swims to Rottnest Island since and this year, my goal is simply to make it to the island,” he says. 

With years of experience including team crossings, solo attempts, a cancellation, and time spent paddling for others, Madoc knows exactly what the channel demands. “Everything I’ve learned shapes how I train and how I’ll tackle the day,” he explains. 

Training now is about balance: managing fatigue, protecting his body, and fitting preparation around everyday life. “The most important thing is learning how to manage my body. The fatigue, the sleep,” he says. 

Behind him stands a tight-knit crew of friends and family; paddlers, boat support and beach crew, who power his confidence as much as his strokes. “These people mean so much to me,” Madoc reflects. “They give so much of their time to help me chase my dreams.” 

Why it matters 

For Madoc, swimming to Rottnest is only part of the journey. What truly drives him is the hope of creating change for people living with MND.  

“I hope my efforts will assist in raising awareness for this cruel disease. And the funds raised will help assist in research and help with supporting families impacted MND with medical treatment and equipment to help them get through really tough times and make the smallest thing such as communicating slightly easier.” 

The impact of MND is devastating. Every single day in Australia, two people are diagnosed with the disease and two people lose their lives to it. Right now, more than 2,700 Australians are living with MND, and that number is expected to rise to around 4,300 by 2050.  

“It’s obvious that this disease can affect anyone, whether that be yourself or someone you may even know.” 

Taking the leap for FightMND 

For anyone considering a challenge to support FightMND, Madoc’s advice is simple. “Do it!” he exclaims. “As my parents say, ‘You only regret what you don’t do. Not what you do,’”.  

Madoc is someone who hasn’t found fundraising a natural thing to do. “I’ve always been too shy to ask people to donate their own money. I don’t like putting any pressure on people,” explains. But, reframing his purpose changed his view. “I’m not fundraising for myself,” Madoc explains. “You’re doing this for everyone affected by this horrible disease.” 

Representing FightMND and swimming in honour of his Nana and every one affected by the Beast is something Madoc carries with deep respect.  

“Being able to represent this amazing charity and the people suffering from MND makes me feel honoured and privileged to be in the position to swim these swims for them.” 

How you can get involved 

Madoc’s journey is a reminder that the fight against the Beast takes people. Whether it’s swimming, walking, cycling, hosting an event, or taking on a personal challenge, there are many ways to fundraise for FightMND. 

You don’t need to swim the Rottnest Channel to help change lives. You just need a goal and a reason. Together, through challenges big and small, we can raise awareness, fund research, and support families affected by MND. 

If you’ve been thinking about doing something meaningful, this is your sign. Learn more about how you can fundraise for FightMND on our Ways to support page. 

Julie’s Story: From discovery to possibility in MND research 

For people living with motor neurone disease (MND), time is everything. With limited treatment options and rapid disease progression, the need for new therapies has never been more urgent. 

That’s why Professor Julie Atkin, Professor of Neurobiology at Macquarie University’s Macquarie Medical School, is leading a promising new research project supported by a 2025 FightMND Drug Development Grant. 

Julie’s project, Repurposing Diazepam as a New Therapeutic Approach for MND, takes a practical and innovative approach; investigating whether a widely used drug could be redirected to treat MND. 

“This project will examine whether a known drug, for which extensive research already exists, has the potential to be a new treatment for MND,” Julie explains. Diazepam is a medicine that has been used by doctors all over the world for more than 60 years. Because it has been studied so much, scientists know it is safe, easy to access, and affordable. This makes it a strong and practical option to test as a possible new treatment for MND. 

Repurposing existing medicines can reduce the time and cost required to bring new treatments to patients. While developing a new drug can take up to 20 years and cost billions of dollars, repurposing could reduce that timeline to just a few years. For a disease like MND, where progression is rapid and options are limited, this efficiency could be transformative. 

Julie’s team will test diazepam in mouse models of MND that develop paralysis, muscle weakness, impaired movement, and motor neuron loss similar to those seen in people with the disease. “If the drug prevents these key features in MND mice, it will provide strong evidence of its potential to treat these characteristics in humans,” Julie says. 

Importantly, the research targets early disease mechanisms. Motor neurons become overactive early in MND, and abnormal accumulation of the TDP-43 protein, a hallmark of the disease, occurs in around 97 per cent of cases. Targeting these processes early may offer a more effective therapeutic strategy than treating symptoms later in the disease course. 

People living with MND are already helping shape the research. Julie’s team has engaged with the Australian Lived Experience Network and works closely with the Macquarie Neurology Clinic, which cares for around 10% of Australia’s ALS patients. This close connection ensures the research remains grounded in real-world needs and priorities. 

This work would not be possible without FightMND’s support. “Preclinical drug development is extremely difficult to fund, yet it is a critical step in translating discoveries into treatments,” Julie says. “Without FightMND’s support, it would be impossible for us to test whether this drug has the potential to be repurposed for MND. By funding projects like this, FightMND is addressing a vital gap in research and accelerating the search for effective therapies.” 

Celebrating women in MND research 

Professor Julie Atkin is just one of many extraordinary women leading vital research into MND in Australia and around the world. Female scientists are advancing MND research at every level; from uncovering the biological mechanisms driving the disease, to developing and testing urgently needed new treatments. 

Their work extends beyond the laboratory, connecting science with lived experience through collaboration with clinicians, patients and families. By mentoring early‑ and mid‑career researchers and championing innovative ideas, these women are helping to build a stronger, more connected MND research community for the future. 

On this International Day of Women and Girls in Science, we celebrate the dedication, leadership and compassion of women like Julie, whose research brings hope to people affected by MND. To all the incredible women working to help us beat the Beast: thank you for your science, your determination and your commitment to a world free from MND. 

From ideas to action: What happens after the Global MND Research Roundtable

When the 2025 Global MND Research Roundtable closed, the conversations didn’t stop. They sparked action.  

The Roundtable brought together researchers, clinicians and experts from around the world. Together they had a shared goal: to make faster, meaningful progress against motor neurone disease (MND). Over two days, participants exchanged, debated, and refined ideas. Collaboration was key to deciding what matters most in MND research.   

By the end of the Roundtable, there was a clear outcome. The group agreed on five clear, achievable priorities that could advance MND research. They emphasised that global collaboration is essential for making real progress. 

From agreement to action 

After the Roundtable, FightMND and ALS Canada developed a detailed report. This report ensures the priorities identified during the Roundtable lead to real change. The report included key discussions, decisions and agreed outcomes. It provides a clear roadmap for what needs to happen next. 

But the Roundtable leaders knew that ideas only matter when they lead to action. The next step was to bring the right people together to deliver progress. 

Building the teams to deliver change 

Currently, working groups are being formed to take responsibility for each of the five priorities. These teams will shape and lead projects. They will strengthen collaboration and turn shared goals into action and meaningful outcomes. 

Each group brings together leaders with different skills and experiences. Care was taken to include diversity across gender, geography, career stage, and lived experience with MND. Many participants are new to the Roundtable, adding fresh thinking and new perspectives. 

The response from the global research community was positive. More than 90% of invitees accepted. Positive word-of-mouth from past participants inspired many participants to join.  This engagement shows a strong belief in the Roundtable’s initiatives and collaborative approach. 

What happens next 

The next stage is already in motion. The first meetings for each group will begin in February. These meetings will mark the start of each project. Together, the working group will set clear goals and timelines for their activities.  

A project manager funded by FightMND and ALS Canada will help move these projects forward. This role will provide crucial coordination and support across all groups and maintain momentum. Recruitment for this position is underway. 

Why these outcomes matter 

This structured, action-focused approach turns global discussions into real impact. The Roundtable is helping accelerate progress in MND research. By uniting experts and giving them clear priorities, strong leadership and proper support, we can move towards a future free from MND.  

It’s encouraging to see so many leaders willing to share their time, expertise, and energy. Their commitment shows a shared belief: strategic focus and collaboration provide the best chance for breakthroughs. 

Watch the Roundtable in action 

Hear from participants about how global collaboration is driving the next phase of MND research in our Roundtable video.  

The Global MND Research Roundtable is moving from conversation to action. These outcomes and next steps show real progress toward meaningful change for people living with MND. 

A new chapter in Australia’s fight against MND 

FightMND welcomes the Federal Government commitment of $40.1 million over four years to support the establishment of the Neale Daniher National MND Clinical Network. This investment supports the creation of a coordinated national approach to MND research, ensuring every Australian, regardless of where they live, has equal access to the emerging therapies of tomorrow.  

This significant national investment marks a major milestone in the journey that began with our founders, Pat Cunningham, Dr Ian Davis and Neale Daniher, and has grown into a movement united by determination, hope and a shared belief that together we can change the future of MND. 

The Network honours Neale’s extraordinary legacy and strengthens Australia’s capacity to deliver world‑class care today while accelerating the breakthroughs of tomorrow. 

A commitment to strengthen Australia’s response to MND

This four-year commitment will establish a nationally coordinated system to transform how MND is diagnosed, researched and treated in Australia. This funding is structured across four complementary pillars designed to strengthen Australia’s clinical trials capability, data and diagnostics, workforce and models of care. 

What the network will deliver 

The Neale Daniher National MND Clinical Network represents a major shift in how Australia tackles MND. Instead of operating in isolated pockets, clinicians, researchers, hospitals and health services will be brought together into a coordinated national effort. 

The Network will: 

• Establish Australia as a core destination for MND clinical trials globally, expanding access to emerging therapies, attracting international trials and improving participation for people in regional, rural and remote communities. 
• Lead MND diagnostic and therapy development through data, strengthening national data capability and addressing critical gaps in understanding disease progression and risk. 
• Develop the world’s best clinicians and researchers, investing in fellowships and training to build a strong, sustainable specialist workforce with specialised MND clinical research expertise. 
• Advance research into MND clinical care, supporting projects that improve care pathways and models of care across Australia. 

For the first time, this coordinated approach will streamline how treatments are developed, tested and delivered, ensuring every Australian living with MND has access to the highest standard of care and the latest emerging therapies, regardless of where they live. 

Positioning Australia as a global leader 

This milestone positions Australia to lead, not just contribute to, the global effort against MND. With national coordination, world‑class infrastructure and the support of the Federal Government, Australia is now better placed than ever to attract international research partnerships, biotechnology investment and the most promising new therapies for Australians. 

One piece of the puzzle in a bigger fight 

The Federal Government’s four‑year commitment to establish the Neale Daniher National MND Clinical Network is a critical step forward. But it is only one piece of the puzzle in the broader fight against MND. This disease is complex, relentless and multifaceted. There is no single solution and no single treatment will work for everyone.  

The progress that brought us to this moment has been powered by the Australian community. For years, families, donors, volunteers and supporters have stood shoulder‑to‑shoulder with FightMND. Their support has helped raise awareness, fund world‑class research and build the clinical capability shaping the case for this national Network. Their dedication has driven momentum, sharpened Australia’s research focus and ensured that MND remains impossible to ignore. 

This Network is an important step forward. It shows what we can achieve when people work together to support MND research. Even with this progress, the challenge ahead is still big. Motor neurone disease moves faster than the treatments we currently have. Long term support is important to turn scientific ideas into real improvements for people living with the disease.  

FightMND will keep working to invest in vital MND research and care programs supporting Australians affected by MND.  

Government support plays an important role and the passion and generosity of the FightMND Army adds incredible strength to the fight against the Beast. Together, we can keep driving progress and provide hope for everyone affected by MND.  

Quotes 

The Hon Mark Butler, Minister for Health 

Neale Daniher has led a tireless fight for the MND community, accelerating research and giving hope to thousands of Australians. MND is one of the most harrowing conditions we face. It is progressive, fatal, and there is no known cure . We want to accelerate the development and delivery of effective treatments – and ultimately a cure – for motor neurone disease. With the establishment of the Neale Daniher MND Clinical Network we hope to improve outcomes for those living with this devastating condition.  

Neale Daniher, Co-founder and Patron, FightMND 

When I was named Australian of the Year in 2025, I asked the community to imagine. Imagine unlocking the mysteries of the neurological frontier right here in Australia. This funding commitment from the Albanese Government is a powerful step forward in this fight against the Beast.  

The science is advancing; the momentum is building and the establishment of the Neale Daniher National MND Clinical Network strengthens the foundations needed to drive real progress. This investment isn’t for my benefit. It’s about laying the foundations, so others don’t have to go through what I have. I’m deeply grateful for this support. It is going to help turn hope into action for future generations. 

Dr Bec Sheean, Director, Programs and Cure Research 

Neale’s tireless commitment and work has completely changed the landscape of MND research in Australia, particularly when it comes to clinical trials and research. This announcement of support from the Federal Government will turbo charge these efforts and reinforce Australia’s position as a leader in the fight against MND.  

Investment in the Neale Daniher National MND Clinical Network will power the community of passionate and committed MND research clinicians to better understand Australians living MND both as a population but also as individuals, recognising gaps in access to care and research and fast-tracking discoveries as we better understand the disease and how to treat it. The ultimate goal is that the Neale Daniher National MND Clinical Network will allow all Australians who are diagnosed with MND to have access to specialised MND care, assessment and targeted treatments. The right drug for the right patient at the right time. 

The MND research community is incredibly grateful for this significant support for this incredibly important program of work. 

Bec Daniher, Executive Director, Strategic Alliances 

Dad has always believed that when people join forces, they can create something far greater than anything they could do alone. This announcement brings that belief to life. The Federal Government’s four-year commitment is an important piece of the puzzle in the fight against MND, strengthening national coordination across clinical trials, research and care. 

The progress that led to this moment has been driven by the unwavering support of the FightMND Army and the wider Australian community. MND is complex, and there is no single solution, so we must keep pushing on every front—funding innovative research, accelerating clinical trials and giving scientists the tools they need to take on the Beast. 

On behalf of our family and the FightMND community, thank you to the Federal Government for this decisive commitment. It honours Dad’s legacy through action, hope and momentum toward a future free of MND.