Five ways you can bring the Big Freeze to your Community 

Have you ever watched the Big Freeze at the MCG and wondered how YOU can bring the freeze to your community?  

This year, it’s YOUR time to step up and freeze every corner of the country with Big Freeze in your Community! It’s your chance to get creative, have a blast, and make a real impact in the fight against motor neurone disease (MND). 

Sure, we all know the Big Freeze slide, but what if you’re looking to do something a little cooler? Look no further! Here are five different ways you can bring the Big Freeze to your community in 2025: 

Dare your boss or principal to take on the ice bucket challenge 

Time to throw down the gauntlet! Challenge your boss, school principal, club president, or even that one friend who always says no to dares to take on the ice bucket challenge. Here’s the twist. Let the community decide who gets doused next! The more people you get to join in, the more funds you’ll raise for MND research and care projects. It’s cold, it’s hilarious, and it’s for a fantastic cause! 

Brain freeze for a cause with a Big Freeze Trivia Night 
Ready to test your knowledge and have a laugh? Host a trivia night with a frosty theme! Set it up at your local pub, community centre, or even a school hall. Spice it up with questions about cold weather, the Big Freeze, and MND awareness. Throw in some icy-themed prizes (snow globes, anyone?) and let the teams battle it out to be crowned the ultimate Brain Freeze champions. Bonus points for frosty costumes! 

Strut your stuff with a cold weather costume parade 
Why just walk when you can strut in style? Grab your warmest, wackiest, most outrageous cold-weather outfits and join the Cold Weather Costume Parade! From snowmen to penguins to winter superheroes, the sillier, the better! Everyone can join in and spectators can donate to cheer you on as you freeze for a cause.  

Make a splash with a polar plunge 
Who’s up for a real chill? Get your friends and community together for the ultimate polar plunge at your local pool or beach. It’s not just about the ice-cold water. It’s about making waves in the fight against MND! Dive in, raise funds, and make it the coolest event of the year. Trust us, nothing feels quite as exhilarating as taking a chilly dip for a cause that matters. 

Get your feet in the game with the wear your Big Freeze 11 Socks Day 
Want to keep it simple but still make a big impact? Organise a Wear Your Big Freeze 11 Socks Day at your school, office or sports club. Everyone rocks their Big Freeze 11 socks for the day. You’ll be looking stylish, staying warm, and making a huge difference in the fight against MND.  
Don’t have socks yet? Head over to our Big Freeze 11 Socks page to get your gear! 

BONUS! The great icy bake off 

Calling all bakers! Time to get frosty in the kitchen. Gather your friends, family or neighbours and have an Icy Bake-Off! Create cold-themed treats like frozen cupcakes, snowflake-shaped cookies or ice cream cakes.  

Hold a tasting event where people can sample these frosty delights in exchange for donations. It’s a win-win: tasty treats and funds for MND research! 

Ready to dare to do and team up for Big Freeze in your Community? 

There are many different ways you can dare to do and bring the Big Freeze to your Community in 2025. Every event and every gesture, no matter how big or small, helps us move closer to a future without MND. 

Join FightMND today, and together we’ll make 2025 the biggest freeze yet. Head to our Big Freeze in your Community page to find out how you can get involved! 

Supporting MND Care: Meet Dr Min-Yin Yap

In honour of International Women’s Day on 8 March, FightMND is celebrating the inspiring women working behind the scenes helping drive the fight against motor neurone disease (MND). Today, we’re introducing Dr Min-Yin Yap, FightMND’s Care Grants Manager. With a deep commitment to helping those supporting those living with MND, their families and their carers, Min plays a key role in directing funding for care programs and research. 

In this interview, Min shares her professional journey, the importance of community support and the tangible impact of her work in the care and research space. She reflects on the challenges of ensuring equitable care for all and how her diverse professional background helps shape her approach to tackling complex problems. 

What is your role with FightMND? What does it involve, and what is your favourite thing about it? 

I am FightMND’s Care Grants Manager. My role involved overseeing our Care Program, which focuses on improving the lives of people affected by MND in Australia. This includes funding targeted support for people with MND, care-focused research and the development of national care guidelines. 

My favourite part of the role is seeing tangible outcomes. Some investments can make a significant difference to people affected by MND in a short amount of time. I also appreciate that, more and more, research and care decisions are being guided by the needs and priorities of people living with MND, rather than being solely driven by experts. 

What did you do before working with FightMND? How does your professional experience contribute to your current role? 

Before joining FightMND, I worked as a biochemist in both academia and industry. However, research wasn’t the right fit for me, so I transitioned into roles that supported researchers in grant funding and project management across different sectors, including manufacturing and wildlife health. 

My background in biomedical sciences has helped me understand MND, while my experience in grant management and stakeholder engagement supports my current role. A brief stint at a women’s health research centre exposed me to healthcare inequalities in Australia, which is relevant to the care of people living with MND. I’m not an expert in this field, but my diverse experience allows me to ask the right questions, identify issues and find solutions. 

What are you currently working on for FightMND? 

We’ve recently funded the development of MND care guidelines. My hope is that, in two years, we will have a set of recommendations that will improve MND care in Australia and reduce the inequities we currently see across the country. 

We’re also working on a community survey in collaboration with MND Australia. The survey aims to identify the needs and priorities of people living with and affected by MND. It was co-designed with those affected by MND, clinicians and researchers. The results will be checked by the same group. We will use the findings to inform our updated care strategy later this year, ensuring it reflects the voices of people living with MND. 

Your role involves working closely with organisations supporting those living with MND. How important is the support of the Australian community in the work that you do? 

The support of the Australian MND community is crucial. I’m not an expert in MND care, so I rely on the community to identify gaps in the current health, disability and research systems. The conversations I have with people affected by MND help me make informed decisions about where to direct funding to areas that need attention or improvement. 

Help FightMND support those living with MND 

At FightMND, we recognise that while the search for a cure continues, the daily lives of those living with MND are full of challenges. That’s why we’re committed to investing in initiatives to improve the care and support for people living with MND, as well as their families and caregivers. 

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 will help 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. 

Volunteering to raise awareness: Di’s story 

When Frank Glynn retired, he and his wife Di, started to make plans for life after work. A fit and healthy man who ate well, Frank was looking forward to the future. Highest on the bucket list was trip to Ireland, where his father grew up. 

In 2020, things started to change. Frank noticed a change in his left hand and arm. He didn’t have the strength that used to be there. His grip wasn’t quite as strong. Wanting answers, Frank began researching his symptoms and suspected he might have motor neurone disease (MND). His diagnosis was confirmed shortly after. 

Di remembers Frank researching MND relentlessly, wanting to understand what life had in store for him.  

“Being diagnosed with MND is absolutely something that you cannot comprehend. That you have a life sentence, no cure and an average life span of 27 months,” explains Di. “You have to comprehend what life is going to be like. What you will no longer be able to do”. 

Frank and Di hid his diagnosis from their family until people started to comment on his deteriorating hand. 

“My husband was a very strong man. So unbelievably strong and stoic. But, when we told our children of what was going to happen, it was heartbreaking,” she said. “They have experienced the worst thing, watching a parent die. They were too young to have to go through that”. 

With the help of carers, Frank’s family rallied around him to provide him with care and support throughout his illness. Di often reflects on Frank’s incredible strength and the way her children stepped up, even though they were young and should have been enjoying their time as young adults. 

Frank died from MND at the age of 64, three years after his initial diagnosis. Di deeply feels his loss every day. 

Building connection and volunteering to raise awareness 

After Frank’s diagnosis, a mutual friend reconnected Di with Jan Daniher. They first met many years earlier when the Daniher family lived in Western Australia. With a shared experience of living with a loved one with MND, Jan offered invaluable support during Frank’s battle. This connection inspired Di to get involved with FightMND and volunteer for the Big Freeze. 

Volunteering with FightMND has given Di the chance to share her story, raise awareness about MND and contribute towards a world without MND. 

“Surprisingly, not many people know what MND is. I want to help ensure fewer families face the same heartbreaking situation we did,” she shared. “FightMND has done incredible work in raising awareness and making a real difference. I can’t imagine where we’d be without the passionate and dedicated people fighting to improve lives.” 

As a volunteer, Di found a platform to not only advocate for the cause but also meet others who share her connection to MND. 

“When you know someone affected by MND, you quickly realise how many others are facing similar struggles. Volunteering with FightMND has given me the opportunity to champion this cause. This is something everyone should do. By volunteering, you’re helping to make a real impact in the fight against MND.” 

“A life is worth more than just the last 27 months,” Di said. “Our fight isn’t just for those directly affected by MND. It takes a community to defeat this beast. Volunteering is one powerful way to make a difference.” 

Register to become a FightMND volunteer during Big Freeze 11 

Our volunteers sit at the heart of the Big Freeze campaign. Their support ensures we can continue to invest in critical research and programs to support those living with MND, their families and their carers.  

Will you dare to do and volunteer with us during Big Freeze 11? Learn more about the work of our volunteers and how you can get involved on our Volunteering page. 

Through the trees to the seas. Join us for Daniher’s Drive 2025 

Gather your teams and start your engines! FightMND has released the route for Daniher’s Drive 2025! 

Daniher’s Drive isn’t just about the scenic routes or the thrill of the journey. It’s about the people we meet, the stories we share and the cause we fight for. Join our Drive family as we visit some of Victoria’s most beautiful spots, all while raising funds and awareness for MND research and care programs. 

Want to learn more about the Drive in 25? Visit our Daniher’s Drive page.  

Don’t just drive. Drive with purpose. So, rally your team, register today and help us push closer to the finish line in the battle against the Beast. Together we can make a difference in this fight. 

Early bird offer extended to celebrate our Australian of the Year! 

Congratulations to our Co-Founder and hero, Neale Daniher AO, for being named 2025 Australian of the Year! 

To celebrate the man who started it all, including this iconic Drive, we’re extending our early bird offer to Tuesday 18 February. 

So, if you’ve been waiting to learn more about the Drive before registering – now is your chance! Register today to receive $50 off your registration fee!  

Neale Daniher AO named 2025 Australian of the Year 

Neale Daniher AO has been named the 2025 Australian of the Year in recognition of his extraordinary leadership and tireless advocacy for motor neurone disease (MND) research. At the award ceremony in Canberra, Neale thanked his family, friends and the dedicated team at FightMND for their unwavering support. 

After being diagnosed with motor neurone disease in 2013, Neale, alongside the late Dr Ian Davis OAM and Pat Cunningham, co-founded FightMND with the goal of raising awareness and funding vital research. Through initiatives like the Big Freeze and Daniher’s Drive, Neale’s leadership has inspired Australians to join the cause, raising more than $100 million for MND research and projects to support those living with MND. 

Despite his ongoing struggle, Neale remains a dedicated advocate. His journey continues to give hope to those living with the disease and helps fuel the mission to find a cure.  

Upon receiving this honour, Neale said: 

“I am deeply honoured to accept the title of Australian of the Year 2025. This recognition isn’t just for me; it belongs to the entire MND community—the families, the carers, the researchers, the volunteers, all those at the FightMND foundation and MND state associations and the countless Australians who have joined us in this fight. 

It also belongs to my family, headed by my wife Jan and our children and their partners, who have been with me every step of the way on this challenging journey. 

The journey began for me in 2013 when I was diagnosed with motor neurone disease—a beast of a disease. It doesn’t discriminate; it robs you of your ability to move, speak, swallow, and eventually breathe. But it did something else too: it lit a fire within me, a determination to fight for those who are currently affected and those who will face it after me. 

I chose to fight because if I didn’t, how could I expect anyone else to? I chose to hope because I believe in the decency and generosity of Australians. I thought, if people truly understood the challenges we face, they’d join the fight with me. And you have—oh, how you have. So again, I thank you. 

Together, we’ve built a movement. Since 2014, we’ve raised over $115 million for care & medical research, supported clinical trials across the country, and developed new drugs that offer hope. More than that, we’ve shown people living with MND that they are not alone. 

Our vision is simple: a world without MND. Some may call it a dream, but I don’t believe it’s an impossible one. This disease is not incurable; it’s simply underfunded and misunderstood. With focus, funding, and unwavering determination, we can change that. 

So tonight, I ask you to imagine. Imagine unlocking the mysteries of the neurological frontier right here in Australia. Imagine a world where families don’t lose their loved ones to this cruel disease. And imagine the power of what we can achieve together when we each take small steps to make a difference. 

To everyone who has bought a beanie, donated a dollar, or spread the word—thank you. You are proof that when Australians unite, nothing is impossible. 

In my lifetime, I hope we find the underlying causes of MND, better treatments, and, ultimately, a cure. But beyond that, I hope to leave a legacy that says this: no matter the odds, no matter the diagnosis, we all have the power to choose to fight, to choose our attitude, to choose to smile, and to choose to do something. 

Because the mark of a person isn’t what they say. It’s what they do. 

I am grateful and honoured to be Australian of the Year, and I know that this nomination will help grow awareness for our cause so that together, as Australians, we can continue this fight against the beast and one day achieve our vision, a world without MND.” 

FightMND CEO, Matt Tilley, congratulated Neale for this extraordinary recognition, acknowledging the significance of the honour.  

“Congratulations Neale – our Patron, Co-founder and now Australian of the Year. It’s becoming increasingly tricky, and sometimes a little fraught, to describe what is truly Australian – but I think Neale and his remarkable story capture the essence of what we think we are at our very best. 

Courageous and upstanding in adversity. Bold and relentless in trying to help others. Humble with a cheeky dash of humour when people recognise these qualities in us. The whole Fight MND team is inspired by him every day. And even prouder today.” 

The FightMND team congratulates Neale on this special honour. His strength drives the organisation’s mission of a world free from MND. 

Beanies, brainpower and BIG moments – 2024 in review 

As 2024 comes to an end, the FightMND team is hitting rewind and reliving some of our favourite moments from the year that was. From the Big Freeze to getting out to the community for DIY Big Freeze and Daniher’s Drive, we’ve shared some special moments with you all. 

Freeze the Day: DIY Big Freeze brings the cold to communities across Australia 

For Big Freeze 10, we asked you to let your actions speak louder than their words. Don’t say. Do. 

And wow, did you deliver!  

From sports clubs to schools, workplaces to backyards, Aussies from Broome to Brisbane took the DIY Freeze challenge to a whole new level, bringing the Big Freeze to their communities with style and creativity. Some of you went all in – donning your Beanies and Socks for the Big Freeze 10 community round. Others decided to do their own icy challenge with a twist. One thing’s for sure—you all know how to bring the chill! 

Our team loved seeing the wild, fun, and totally unique ways you helped in the battle against the Beast. We can’t wait to see what kind of freezing fun you’ll bring for Big Freeze 11 in 2025! 

Australia gets frosty! State Freezes turn up the chill factor 

In 2024, we set out to freeze the nation like never before – with epic state freezes in WA, SA, and Queensland! And wow, did each state bring their A-game. Shoutout to Michael Hussey for bringing Kenough magic to the WA Freeze!  

Another highlight for the team is our first-ever SA Freeze with the Adelaide Crows! A frosty, fun-packed event that brought the whole community together. 

The FightMND team would like to extend a huge thanks to the Adelaide Crows, West Coast Eagles, and the Brisbane Lions (hello, reigning Premiers!) for helping us take the Big Freeze across the country. 

Hold tight, because the State Freeze is making a comeback in 2025! More chills are on the way—keep an eye out for what’s next! 

Nine sliders. One blockbuster freeze. Big Freeze 10 faces the Beast head on! 

Big Freeze 10 at the ‘G’ was an event for the ages, as nine bold sliders brought their wildest alter egos to life and took the icy plunge like rockstars! 

Nic Naitanui brought two for the price of one, starting out as the iconic Bob Marley before channelling the classic film Cool Runnings. Golden girl Sally Pearson transformed into the ultimate material girl, Madonna. While James Brayshaw traded Paradise City for icy November Rain as Guns N’ Roses frontman, Axl Rose.  

Cricket legend Meg Lanning hit us for six as Tina Turner – simply the best indeed! While Joel Selwood channelled Robbie Williams, proving there’s no better man to take the plunge. While Mack Horton showed us why he was King of the Mountain and king of the slide as Peter Garrett.  

Jack Riewoldt kept the energy high with Mr Brightside, Erin Phillips pumped up the crowd as P!nk, and Pat Rafter left us Thunderstruck as AC/DC’s Brian Johnson. 

And of course, the real stars were YOU—decked out in your Beanies, creating an ocean of blue at the MCG. Whether you were cheering for the Demons or the Magpies, you made it clear: you’re standing strong in the fight against the Beast. 

FightMND’s Global MND Research Roundtable: where brilliant minds unite 

In August 2024, we hosted the very first Global MND Research Roundtable in Melbourne. Experts from around the world came together to tackle some of the toughest challenges in MND research. The event focused on understanding the causes of MND, improving diagnosis through biomarkers, and creating better classification methods. Delegates collaborated on solutions, with a strong emphasis on harmonisation and standardisation to unite global research efforts. 

Check out our most recent article to learn more about what we’ve been working on since the Roundtable and what’s coming up in the coming year.  

Magic and memories: fairytale fun lights up Lorne at the Daniher’s Drive finale 

In October, 250 amazing participants hit the road for Daniher’s Drive, and what a ride it was! The Drive is always close to our hearts – it’s our chance to hit the open road, connect with others, and of course, put the FUN in FUNdraising!  

And the grand finale? A fairytale for the ages! Our Drive family became legendary (and a few hilariously quirky) fairytale characters for a night that was nothing short of magical!  

This year’s Drive raised over $2 million for vital MND research and care. This incredible achievement is thanks to our Drive family, the generosity of the Aussie community, and our amazing partners. Thank you to everyone who made this possible! 

More than $18 million invested to supercharge MND research and Care programs 

In 2024 FightMND invested more than $18 million into MND research and care projects. This marks a major milestone in our decade-long journey, pushing our total funding to an incredible $115 million since we began. 

This year, we’re proudly supporting 25 innovative research projects, from cutting-edge drug development to diving deep into the mysteries of MND. We’re also backing 10 vital Care initiatives, providing critical support for Australians living with and affected by MND. 2024 also marked the presentation of the first Dr Ian Davis AO Award for research excellence.  

Each project and initiative brings us one step closer to unlocking effective treatments and, one day, a cure for this devastating disease. Curious to learn more about the amazing work being done? Check out our News section to discover the incredible projects that received funding this year. 

Thank you for all your support in 2024! 

It has been another huge year in the fight against the Beast.  

To everyone who volunteered, hosted a DIY event, participated in a Community Round, hit the road with us for Daniher’s Drive, purchased a pair of socks, bought a Beanie and donated throughout 2024 – thank you.  

It takes people to win this fight. Everything we have achieved this year has been thanks to you. Your support helps researchers continue their efforts to find better treatments, and one day a cure, for MND. But, more than that, your support show those living with MND, their families and their carers that they are not alone in this fight. 

While we have come a long way in this fight, there is still a long way to go. So, we keep fighting. Keep working towards our vision of a world free of MND.  

We go again. 

Global MND Roundtable continues to drive collaboration

International collaboration and alignment is crucial for advancing MND research. In August 2024, we hosted our inaugural Global MND Research Roundtable in Melbourne, Australia. The Roundtable aimed to address key challenges in MND research, including: 

• understanding the causes and key features of MND and identifying drug targets 
• understanding the variations occurring in MND 
• defining ways to accurately classify the type of MND affecting a person 
• developing biomarkers that quickly diagnose MND. 

The Roundtable was a unique forum, challenging attendees to think outside the box. The event united MND researchers, global collaborative leaders and strategic experts, and those with firsthand experience of MND. It fostered a rich diversity of views to address important themes and create actionable outcomes. 

Delegates worked together to gather information and understand issues, break down the problems and identify and prioritise actionable solutions. Working together, delegates gathered information to understand issues and break down the problems. Delegates developed actionable solutions for each of the four key challenges. These fell into two distinct categories: 

• Harmonisation: encouraging everyone to work together to align research efforts and build consensus. To focus on improving resource and knowledge sharing to better coordinate our approach to new efforts and initiatives. 
• Standardisation: providing guidance on how to work smarter and more efficiently across all research stages to achieve better results. 

FightMND is now working with experts in the field to address these areas. This includes working with MND Australia and ALS Canada to develop a Global MND Research Acceleration Strategy. This Strategy outlines seven ambitious and essential goals to accelerate MND research through global alignment and cooperation:  

1. centralisation of big data 
2. collaboration on biobanking 
3. global approaches to studying presymptomatic / asymptomatic patients 
4. recommendations of what is best practice in MND research 
5. decentralised human MND model core 
6. biomarker best practices for preclinical studies 
7. master protocol for clinical trials. 

FightMND is working to ensure this work complements the current MND landscape. This aims to avoid duplication and achieve the best results. We hope that by working together we will overcome major challenges in MND research. In turn, this will help speed up the development of effective treatments for ALS/MND. 

Delegates reunite at the 35^th International Symposium on ALS / MND 

On 8 December 2024, FightMND, in partnership with MND Australia and ALS Canada, hosted the Global MND Research Roundtable breakfast in Montreal during the 35th International Symposium on ALS/MND. The event brought together leading experts, ALS/MND organisations, industry professionals and those living with the disease.  

The event saw FightMND grow its international collaboration, with 25% of attendees being new key opinion leaders.  

Attendees had the opportunity to share their thoughts on a range of topics, including the: 

• 2024 Roundtable event 
• Global MND Research Acceleration Strategy 
• Principles of governance 
• Best practices for effective working groups 

Delegates were invited to join a call in early 2025 to discuss each strategic goal and nominate members and Chairs for each working group. Stay tuned to learn more about these groups and their work under the Strategy. 

Looking forward to 2025 

We are committed to continue building on this collaboration into 2025. The FightMND team is working closely with Roundtable delegates and national and international MND associations to: 

• create a white paper on the Strategy 
• establish working groups for each of the seven goals for MND research. 

To tackle these important areas, each working group will bring together leading experts from various industries, along with those with personal experience of MND. While some may not be MND-specific experts, their expertise in related disciplines will provide valuable insight and a well-rounded perspective. 

The FightMND team is excited to share more about our work in this space in the new year. So, stay tuned!  

Cathy’s story: Knowledge is power in the battle against MND

With a heart full of passion, Ebbel Bierman lived and breathed footy, supporting both the Canberra Raiders and the Western Bulldogs. But no team, no game, could compare to the love he had for his family. His wife, Sue, and daughters Alison, Louise, Cathy, and Joanne were the heart of his world, the ones he adored beyond measure. 

As Cathy remembers, Ebbel was a man who saw the bigger picture. A man who understood the importance of research in the battle against motor neurone disease (MND). With unwavering conviction, he supported the fight for a cure, knowing that every breakthrough brought the world one step closer to the answers so many desperately needed. 

“Dad died in February 2023, 11 years after first being diagnosed with MND. Throughout that time he was really reflective on his diagnosis. He said, if I can do anything that can help other people, it might not help me, but it might help someone else. His participation in research was how he did that,” said Cathy.  

In 2016, Ebbel and Cathy participated in an important MND research study, led by Associate Professor Shyuan Ngo from the University of Queensland and the Royal Brisbane and Women’s Hospital. With the support of a Scott Sullivan MND Research Fellowship, the study aimed to better understand metabolic dysfunction in people living with MND/ALS. 

“They were hypothesizing that the increase in metabolism and loss of weight would increase the rapid decline in MND. So, for 12 months Dad would go in, put on his swimmers and swimming cap and sit in a pod and then lie down and do nothing – just be completely sedentary. While he laid there, they would track how much oxygen he breathed in and his metabolism,” explained Cathy. 

“I got the opportunity to do one of the pod sessions as a control because even though I was related to him, because I was female and didn’t have MND, they were able to use my session as a control. So, we were both involved in that which is pretty cool.” 

Committed to learning all she could about MND and the research being done around Australia, Cathy would try to attend symposiums and talks, to expand her understanding. Today, she continues to advocate the important role research and knowledge plays in the fight against MND. 

“Research is gold. There is lots known about MND, but not so much about how we can stop it. You can help by having lots of knowledge. Knowledge is power.” 

FightMND invests more than $18 million into research in 2024 

In 2024, FightMND is investing $18.89 million into MND research and care initiatives for people living with MND.  

Of this, we’re investing $15.44 million into MND Cure research, supporting 25 projects and five career development awards, including:  

• 4 drug development projects to advance promising new drugs or therapies  
• 7 discovery projects addressing key unknowns in MND research, particularly its causes and progression   
• 11 Improving and Accelerating Translation (IMPACT) projects focusing on overcoming challenges in MND drug development and clinical trials  
• 2 infrastructure projects to advance MND research infrastructure  
• 1 Massey Charitable Trust grant   
• 1 mid-career research fellowship to support mid-career researchers focusing on MND  
• 4 early career research fellowships to support early career researchers focusing on MND.  

We’re investing a further $3.45 million into 10 MND Care support projects for Australians living with and affected by MND. 

Learn more about our investment in our 2024 Cure and Care Investment booklet.  

Join the fight against MND

At FightMND, our vision is a world without MND. Finding treatments, or a cure, for this insidious disease is only possible through careful, rigorous research. To properly tackle such as relentless disease, the progress can be slow, but the outcomes are progressing this fight. 

In just 10 years, we’ve made incredible progress, but we are not done yet. There is still much work ahead, and we need your help to continue this fight. A donation to FightMND will help us fuel the research that will lead to breakthroughs in treatment and, one day, a cure.

By donating, you’re providing hope to those Australians living with MND. Hope that one day we’ll defeat this Beast for good. 

Researching why MND impacts people in unique ways

Motor neurone disease (MND) presents a unique puzzle for researchers, with its many forms and unknown causes creating significant challenges. These complexities can lead to roadblocks that slow down progress in drug development and clinical trials. However, IMProving and ACcelerating Translation (IMPACT) projects are working to break through these barriers and speed up the process of finding effective treatments. 

The goal of IMPACT projects is to address the obstacles in developing and testing drugs for MND by accelerating the translation of research into real-world therapies. This involves improving drug design, identifying the genes responsible for the disease, and gaining a deeper understanding of how MND manifests differently in individuals. IMPACT also focuses on creating more accurate lab models and developing diagnostic markers to enhance MND research and treatment. 

At the forefront of this groundbreaking research is Associate Professor Shyuan Ngo, a Group Leader at The University of Queensland’s Australian Institute for Bioengineering and Nanotechnology. With a strong track record in translational research, disease modelling, and biomarker development, Dr. Ngo is a leader in the MND field. 

In 2024, Associate Professor Ngo received two grants from FightMND totalling nearly $1.3 million. Once of these projects is an IMPACT project helping to understand why MND presents differently in people.  

Below Associate Professor Ngo tells FightMND more about her IMPACT project and why it is important for future research into MND.  

What is your project about? 

In MND/ALS, we don’t yet know what triggers the disease or how it progresses in the brain. This project will use brain samples from both ALS mice and people living with ALS, ALS-related dementia (ALS-FTD), or frontotemporal dementia (FTD) to create detailed gene maps. These maps will help us understand how changes in brain cells happen over time and contribute to the development of the disease. 

What do you hope to achieve with your project? 

Our goal is to compare the gene maps we create from brain tissue with those we’ve already made from spinal cord tissue. By combining these maps, we hope to identify key pathways that we can target—and the right time to target them—to prevent motor neurons from dying prematurely in ALS / MND. 

What is new about your project/trial? How has this new development come about?   

We have previously generated gene maps to study what drives the death of nerve cells in the spinal cord. But we still do not know whether this happens before or after the death of nerve cells in the brain.  

This project will generate the first combined gene maps of the brain and spine to help us understand the sequence of events that drive disease progression in ALS / MND. 

How does this project contribute to the Australian and international research community? 

As part of this project, we will create an interactive web tool that the Australian and international research community can use to explore our gene maps of the brain and spinal cord for their own interest and for the generation of new research questions.  

What is the significance of FightMND’s investment in helping you progress your project/trial to the next stage?  

FightMND’s investment into this project is important because the information that we generate from this project will help us to then identify what we need to target, and when we need to target them to prevent to nerve cells from dying.   

In your opinion, why is it important for Australians to continue to donate to FightMND?   

Continued donations to FightMND allows them to support important research that will help us to find ways to halt or cure the disease. 

Creating hope through investing in research 

Associate Professor Ngo’s research is just one of 25 Cure research projects receiving funding in 2024. This funding takes FightMND’s total investment into Cure research to $100.67 million since 2014. 

Funding this research is important to increase our chances of a breakthrough, but it is a lengthy and costly process.  

FightMND’s commitment to finding a cure is built on four key pillars: 

• Funding world class research: We invest in top-tier research through a rigorous and competitive grants program aligning with the National Health and Medical Research Council (NHMRC) grants process.   
• Capacity building: We enhance the capacity and capability of the MND research workforce through scholarships and fellowships.  
• Infrastructure: We make targeted investments in critical infrastructure that supports MND research in Australia.  
• Knowledge exchange: We facilitate the sharing of knowledge across the national and international MND community.  

These investments ensure that MND research in Australia remains competitive and world-leading, driving us closer to better treatments and a cure for MND. You can learn more about our investment in research on our Cure investment page.  

Curious to see the impact of your support in 2024? Check out our 2024 Cure and Care Investment Booklet to learn more about the cutting-edge projects we’re backing this year. 

Together, we can defeat the Beast that is MND.

A Friend’s Place: helping families navigate the heartache of MND 

A motor neurone disease (MND) diagnosis sends shockwaves through every corner of a person’s life. It doesn’t just affect the person receiving the news. It creates a ripple that spreads out, touching everyone who loves them. For families, the impact can be especially overwhelming. Trying to make sense of a loved one’s diagnosis, whilst also supporting children through the emotional turmoil, is an incredibly difficult challenge. 

A Friend’s Place is a Care initiative that received FightMND funding in 2024. The program is a collaboration between the National Centre for Childhood Grief (NCCG) and Australia’s MND associations. It offers specialist care packages designed specifically for families with children aged 3 to 17, helping them navigate the emotional complexities of living with a close family member who has MND. 

FightMND’s support of this program is a continuation of its contribution to the initiative’s 2023 pilot program. The 2024 investment will see the program expanded to 35 families across Australia. These families will receive individual counselling sessions and group family counselling sessions, either in-person or online. Support for the children’s schools and other important care resources are also included in the program. 

For Chris Waugh, Head of Development at NCCG, the program supports families impacted by MND to understand and cope with grief and loss. 

“Families where a loved one has been diagnosed with a terminal illness, like MND, face a lot of challenges. Their loved one is still alive, but they know they have a terminal condition. There is no hope for recovery,” said Chris. 

“For children, they need to hear the truth in an age-appropriate way and have a choice to be involved in what is happening. The NCCG’s specialist staff will help both children and adults to develop their coping skills and other personal strengths to build long-term resilience. This resilience, in turn, helps children and adults to minimise future mental health challenges, stay connected with their education and community and lead their own best lives,” he said. 

This year’s investment includes providing targeted training for frontline care staff from each Australian MND association. This training will enhance their ability to support families through their grief and bereavement. It will ensure families receive the guidance and resources they need during this challenging time. 

Andrew and Susan’s story 

Andrew was a family man who loved spending time holidaying with his wife, Susan, and children John, Joy, Thomas and Lucy. His life changed when he received the devastating diagnosis. He had MND.  

Andrew and Susan knew it was important to include the kids in their discussions about what his diagnosis meant. To let them ask questions and prepare them for the journey ahead.  

Shortly after receiving his diagnosis, Andrew and Susan were connected with the NCCG for specialist care. From the start, the family were provided with the support they needed, with grief counselling offered to the whole family.  

Andrew was only 58 when he died in 2023 , leaving behind his wife Susan and four kids. From left to right: John, Susan, Joy, Andrew, Thomas and Lucy.

For Andrew’s eldest daughter, Joy, writing letters to her dad helped her navigate her grief. They helped her work through her feelings and what was happening to her and her family. While these letters were never sent, they were read at Andrew’s funeral as a powerful eulogy to her dad.  

Accessing A Friend’s Place gave Andrew, Susan and their family the ability to have meaningful conversations with one another. Conversations reflecting on the past. Conversations about what was happening. Conversations about what laid ahead. This helped them build resilience and navigate their grief together. 

Investing in Care initiatives to support those affected by MND 

A Friends Place is just one of 10 Care initiatives receiving funding from FightMND in 2024. 

Thanks to your generosity, we can invest in vital programs and initiatives delivered by Australia’s MND associations and other organisations working with those battling the Beast. This investment ensures that these groups can continue to help those living with MND and their families.  

Our investment into Care initiatives focuses on three key priorities that we developed in consultation with the MND community.  

• Evidence: funding care-focused research to inform best practices for supporting people with MND, their carers and families.  
• Standards: Investing in the creation of national standards and guidelines for MND care.  
• Support: Providing targeting support through organisations delivering MND care and services. 

Our Care impact page provides more information about FightMND’s investment in this area. You can also learn more about the amazing initiatives were supporting this year in our 2024 Cure and Care Investment Booklet. 

Help us make a difference for those living with MND

At FightMND, we know that while the search for a cure continues, the daily reality of MND impacts the lives of many Australians. That’s why we’re investing in research and initiatives aimed at improving the care and support available to those affected by MND, their families, and their caregivers.

Our focus on care-centered research is designed to complement the work of MND associations and other organisations across Australia that are committed to improving the quality of life for people living with MND.

But this is a fight we cannot win alone. Your support helps us to:

• Fund vital care-focused research that shapes the best MND care practices
• Improve the accessibility, consistency, and overall quality of care for MND patients
• Increase national awareness of MND and its impact on families

With your help, we can continue to drive progress toward defeating the Beast of MND.