Leaving a Legacy: Peter’s Commitment to Fighting MND 

Neale Daniher’s fight against motor neurone disease has inspired many Australians to stand with him. Among those is Peter, who has chosen to contribute to the fight against MND in a meaningful way. By including a gift in his Will, he is leaving a legacy that ensures research into treatments and, ultimately, a cure can continue. 

Peter’s generosity stems from a deep desire to make a difference. After a successful career spanning four decades, he began to consider how he could leave a meaningful legacy. Without children of his own, Peter discussed his wishes with his family and decided to dedicate his estate to causes that truly matter to him. 

This included FightMND. While he doesn’t have a personal connection to MND, he was profoundly affected by Neale’s public battle and advocacy. Witnessing the sea of blue beanies at the Big Freeze and learning about the devastating effects of MND, Peter felt compelled to join the fight. 

“I wanted to leave a legacy that matters,” Peter explains. “Neale’s strength and determination inspired me to do everything I could to help find a cure.” 

For Peter, this commitment is more than a financial contribution—it’s about being part of Team FightMND. “I hope that my gift will help us beat the Beast. Whether it’s $1 or $10,000, we’re all part of the same team trying to defeat this disease,” he says. 

Peter has always supported causes that have impacted him personally. But it was Neale’s courage that drove him to take action against MND. While he has never met Neale, he has shared beers with Neale’s brother Terry at the Balwyn Football Club and has frequented his sister’s café in Albury. This connection, however small, reinforced his decision to support FightMND. 

Peter’s gift will fund groundbreaking research, clinical trials, and ultimately, beat the Beast. It will support: 

• Ground breaking Research: Funding the most promising scientists working to develop treatments that slow or stop the progression of MND. 
• Clinical Trials: Ensuring potential treatments move from the laboratory to patients, giving hope to those battling the disease. To date, FightMND has funded trials benefiting over 600 Australians. 
• A Future Free from MND: Investing in a world where this insidious disease no longer devastates lives and families. 

Beyond his Will, Peter regularly donates to FightMND, ensuring his impact starts now rather than later. He believes in the importance of keeping Neale’s message alive long into the future.  

As FightMND continues to push for a cure, supporters like Peter play a critical role in ensuring research and awareness remain at the forefront. His story is a powerful reminder that we can all make a difference—today, and for generations to come. 

Including a gift in your Will 

Like Peter, you too can create a lasting legacy.

A gift in your Will to FightMND is the gift of helping us better understand MND. It is a fight of better treatments and therapies for people living with MND. It is an investment into a future without MND. 

Until 6 April, FightMND is offering you the opportunity to secure your family’s future with an online Will through Safewill, normally $160. 

Safewill’s simple platform provides step-by-step instructions, with each Will reviewed by a practicing Australian solicitor for peace of mind. After 12 months, a subscription fee will apply. Safewill’s terms and conditions are available on their website.  

If you would like to have a confidential conversation about the impact you can have on MND research long into the future, please reach out to Eloise Shepherd, our Gifts in Wills Coordinator at [email protected] or 1800 344 486.

The Stickland family freezes the day with the Hills MND Big Freeze 

The story of the Hills MND Big Freeze is one of gratitude and an unshakeable sense of community. After attending a DIY Big Freeze event in Garfield, Victoria, Sarah Stickland turned to husband Matt and said, “We could do this. We should do it after everything FightMND has done for us.” Matt, who has lived with motor neurone disease (MND) for over a decade, wholeheartedly agreed and what started as an event uniting the hills community in the fight against Beast quickly grew into something much bigger.  

Held in the regional community of Emerald, Victoria, the Hills MND Big Freeze brought together families, friends, neighbours and complete strangers. Together they raised awareness and nearly $113,000 for MND research and care initiatives. The event’s success is a tribute to the Stickland family and the strength of the community that rallied behind them. 

In recognition of their impact, the Hills MND Big Freeze was proudly named Event of the Year at the 2025 Cardinia Shire Council Australia Day Awards. A moment that encapsulated not only the Stickland family’s vision but the collective strength of a community united in the fight against the Beast.  

To learn more about the event and the work behind it, we spoke to the Stickland family about their experience in hosting their very first DIY Big Freeze event. 

What inspired you to host a DIY Big Freeze event? How did the community respond to the challenge?  

With MND having a direct impact on our family, we have always been keen to support fundraising efforts. So when we attended a DIY slide event in Garfield, Victoria we were inspired.  The community feel, the funds being raised, and the fun that everyone was having was enough to make us decide that this would be fantastic in our local area.  The Hills community embraced the idea.  We had so much support and more local identities putting their hand up to slide than we could accommodate! 

Can you tell us how the event went? What was the overall vibe of the day?  

The event was brilliant.  I still have people talking to me about the day 6 months later.  It gave the community an opportunity to come together, have a great day out and all for such a wonderful cause. Everything that we had planned came together so successfully.  We had an amazing group of volunteers that worked tirelessly throughout the day selling beanies and promoting raffles and auctions.  All the sliders we had fully embraced the day with costumes and smiles.  We had face painting, live music and plenty of food and drink options. It was so much fun. 

In the weeks leading up to the day, we also had a couple of local identities who were selling beanies right across the Hills Community, at local football and netball matches, supermarkets and even outside the local newsagents. Without their help, we would not have raised as much as we did. 

We also involved the local primary schools to have a competition as to who could raise the most money per student. One local school, Cockatoo Primary, raised over $12,000 alone! 

Were there any standout moments or memorable highlights from the event?  

Announcing the final tally of $113K was a highlight for us.  We went into the event with expectations to raise $20K, and the community support of the event blew us away.  It was also an incredible moment when we looked out across the event to see a sea of blue beanies filling every available space.  Very overwhelming! 

How did the support from FightMND help you in planning and hosting your event?  

FightMND were fantastic.  They were there every step of the way offering assistance and support.  The online portal to set up the sliders was simple to use and very effective to share with the online community.  We even had support from Lynne [FightMND Fundraising Director] on the day which was amazing; and the amazing Ian Cohen [FightMND Media Liaison] volunteering his time to come and MC the event. 

Looking back, what advice would you give to others thinking about hosting their own Big Freeze event in their community?  

Do it! You will be amazed by the number of people that want to support the cause.  It is also such a great opportunity to bring the community together. 

Brad from the Garfield Hotel had suggested that the secret is to try to make it a community event; that was great advice. 

What’s next for you and the community after the Hills MND Big Freeze? Are you planning to bring it back this year?  

We were fortunate to win not only the Emerald Village Association Event of the Year, but also the Cardinia Shire Event of The Year.  This recognition and accolade has driven us to gear up again for the Hills MND Big Freeze 2025.  We have commenced planning and now have even bigger fundraising targets. 

Get your Big Freeze 11 Beanie and live it forward

The fight against MND needs all of us. The Big Freeze is more than a moment. It’s a movement. Every beanie purchased fuels research, care, and hope for those battling MND and their loved ones.

Show your support in the fight against MND and get your Big Freeze 11 Beanie today at Coles, Bunnings, select Shell Reddy Express stores, or online at fightmnd.org.au

Step up and show your support! Wear your Big Freeze 11 Beanie, pull up your Big Freeze 11 Socks, rally your community, organise a community event or push the limits with creative ways to freeze MND. However you choose to get involved, make it count. Then share it with the world on social media! Tag @fightmnd and use #BigFreeze11, #LiveItForward, #TeamUpForBigFreeze11, and #FightMND to spread the word.

Together, we fight. Let’s beat the Beast!

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.