Get involved with the MND community

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

What is the National MND Lived Experience Network? 

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

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

How LEN members get involved? 

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

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

(anonymous, MND researcher) 

LEN members are passionate about supporting projects related to: 

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

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

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

(anonymous, professional group) 

The activities LEN members have participated in include: 

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

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

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

(anonymous, LEN member) 

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

(anonymous, LEN member) 

Connect with the LEN 

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

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. 

Dare to Do and bring the Big Freeze to your Community 

This year, FightMND is challenging Australians to dare to do and team up for Big Freeze in your Community.

Big Freeze in your Community is all about uniting your friends, family, teammates, or your community to take on MND your way. Host your own DIY Big Freeze , join your club’s Community Round, or wear your Big Freeze 11 Socks. Each action helps in the fight against MND. Funds raised through Big Freeze in your Community will support vial MND research and programs helping those living with MND. 

Are you ready to dare to do? Head to our Big Freeze in your Community page to learn about how you can get involved in 2025. Together, we can beat the Beast that is MND. 

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. 

How curiosity led Dr Jennilee Davidson to a thriving research career

Curiosity, passion, and a deep commitment to discovery are essential in the world of scientific research. Especially, when it comes to studying complex diseases like motor neurone disease (MND), also known as ALS. For Dr. Jennilee Davidson, her fascination with the nervous system sparked a journey that began with undergraduate studies in Canada and has now led to a Research Fellowship at Sydney’s Macquarie University.

Dr Davidson is currently completing research into a gene therapy designed to target harmful forms of the TDP-43 protein in motor neurons. For her work, Dr Davidson was awarded an ALS Scholars in Therapeutics fellowship in 2024. This fellowship is delivered in partnership by Sean M. Healey and AMG Center for ALS at Massachusetts General Hospital, ALS Finding a Cure and FightMND. It is designed to engage clinician-scientists and post-doctoral fellows to gain training and experience in therapy development for ALS/MND at their home institution with optional industry experience.

In celebration of the 10th International Day of Women and Girls in Science, we sat down with Dr. Davidson to talk about her path to MND research and the passion that drives her scientific journey.

Can you tell us about your research career so far?

My career in research has largely been driven by my curiosity of how our nervous system works. I completed an Honours degree in neuropeptide signalling at Canada’s Queen’s University and a Master’s in neurodevelopment at York University in Canada. I later earned my PhD in neurodegeneration at Macquarie University.

My first passion was the ‘basic sciences’ with most of my research focused on discovering fundamental intracellular mechanisms, like protein interactions and biochemical regulation of cellular signalling pathways, being supported in part by the National Science and Engineering Research Council of Canada. This provided a solid foundation for understanding how MND-linked genetic mutations can functionally dysregulate these mechanisms to contribute to neurodegeneration in my PhD.

During my PhD and into my post-doc, I worked on developing a new gene therapy for MND. This therapy was patented and licensed to a spin-out company. The project was a team effort led by Professor Roger Chung and Associate Professor Albert Lee at Macquarie University, both of whom have been amazing mentors to me. Working on a project focused on potential treatments inspired me to pursue a Macquarie University Research Fellowship and other opportunities to move research from the lab into real-world applications, always with the goal of helping people.

Being named an international ALS Scholar in Therapeutics with the Sean M. Healey and AMG Center for ALS at Massachusetts General Hospital, in partnership with FightMND and ALS Finding a Cure, has been a major highlight of my career. It’s been a great opportunity to receive real-time feedback from top MND experts, collaborate internationally and learn from leaders in biotech and MND research. Associate Professor Ghazaleh Sadri-Vakili from Mass General has also been an invaluable mentor throughout this experience.

Why did you decide to pursue research into MND?

The people. The community of people with lived experiences of MND, dedicated researchers and clinicians, and supporters of MND research really makes a difference. Our ability to develop and test potential therapeutics on samples donated to the biobank makes our research much more meaningful and relevant.

When I share with people that I research MND, they in turn share stories about how their lives have been affected directly or indirectly by MND. This gives me extra purpose to the research I do every day.

You mentioned that you’re a recipient of an ALS Scholars in Therapeutics fellowship. What does this scholarship mean to you?

The significance of this funding in helping me progress my project is invaluable. It is a very unique global partnership opportunity that is specifically aimed at helping me develop new therapeutic treatments with the support of my mentors from Macquarie University as well as mentors from around the world.

This was my first grant from FightMND and I was so excited to receive the news. To be part of this international and Australian community was a huge success. I’m excited to continue my journey in this research.

Is there anything you would tell young women who are considering a career in scientific research?

It’s a fulfilling career!

Scientific research is becoming increasingly multi-disciplinary, and the skillsets you build will be invaluable throughout your career. Upskill by trying different types of research/skills that align with your interests. Seek out mentorship from different types of mentors at different career stages to maximise the breadth. Actively asking teachers, tutors, lecturers about gaining scientific research experience can lead to some amazing opportunities.

We’re all in this together. Help us in the fight

Dr Davidson, along with MND researchers across Australia and around the world are continuing to further their research in the lab to ultimately get it into clinical trials. While we have made significant progress, research is expensive and takes time. Your continued support helps us to continue to invest in vital research that will lead into effective treatments, and one day a cure, for MND. Together, we can beat the Beast.

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.