MND Community Survey: The power of research in the fight against MND

When nearly 500 Australians affected by motor neurone disease (MND) shared their voices in the 2025 MND Community Survey, their message was clear: research isn’t just important. It’s urgent.

Whether living with MND, caring for someone, or carrying a genetic risk, people told us the same thing: research is the key to hope. Hope for better treatments. Hope for longer lives. Hope for a cure.

What the community told us: research at the heart

One of the key areas the 2025 MND Community Survey explored was research. This included the areas in most urgent need of focus and how people living with and affected by MND want to be involved.

Research participation: a community ready to help

The survey showed that people want to play an active role in driving progress.

• 80% of people living with MND and 72% of carers said they wanted to participate in research.
• Most who were offered the chance accepted and had positive experiences.
• Barriers remain, such as time, distance, strict eligibility criteria and not hearing back about outcomes.

The community’s biggest request? Better access to opportunities and more regular updates on research progress.

Research priorities: what matters most

When asked what kind of research should be prioritised, the community’s answers were clear:

• Finding the cause of MND and slowing progression through clinical trials came out on top.
• Improving quality of life and faster, easier diagnosis were also major priorities.

Priorities shifted depending on experience. Those with advanced symptoms focused more on slowing progression and quality of life, while carers and gene carriers placed greater importance on policy and inclusion.

In short, the community wants research that delivers treatments and answers, while also improving daily life and the systems that support it.

Investing in research: from the lab to real lives

Since its founding, FightMND has invested heavily in research, guided by four key pillars that underpin our commitment to finding a cure:

1. Funding world-class research: supporting top-tier projects through a competitive grants program aligned with NHMRC standards.
2. Capacity building: nurturing the next generation of MND researchers through scholarships and fellowships.
3. Infrastructure: making targeted investments in the tools, facilities, and systems that support MND research across Australia.
4. Knowledge exchange: facilitating the sharing of discoveries and insights across the national and international MND community.

These pillars ensure Australian MND research remains world-leading, driving us closer to better treatments and, ultimately, a cure.

Driving the search for a cure

FightMND supports the full research pipeline, from laboratory discoveries to clinical trials. This work has helped open more clinical trials across Australia, advance new therapies and support emerging researchers through scholarships and fellowships.

The types of grants FightMND offers, includes:

• Clinical trial grants: these test promising therapies directly with people living with MND.
• Drug development grants: these work to translate lab discoveries into potential treatments.
• IMPACT grants: these grants help accelerate discoveries into real-world application.
• Discovery research grants: support projects which investigate the biology of MND
• Fellowships and clinical investigator awards: help build the next generation of MND researchers.

Supporting people today

While finding a cure is our ultimate goal, people living with MND need solutions now. That’s why FightMND also invests in Care-focused research. These are projects that explore ways to improve quality of life, extend survival, and strengthen care systems.

Why it matters

Research is more than science. It’s hope in action. Every trial launched, every grant awarded, every breakthrough funded brings us closer to a future without MND.

Together, with the voices of the community guiding us, we’re not just imagining a world free of MND. We’re building it.

How the survey will guide FightMND’s research investment

The 2025 MND Community Survey gives FightMND valuable insights into the priorities and needs of the MND community. These findings will inform future decisions about where and how we invest in research, ensuring our funding supports what matters most:

• Advancing Cure-focused research, from understanding the cause of MND to testing new therapies in clinical trials
• Supporting Care-focused research, to improve quality of life, survival, and access to support for people living with MND
• Increasing community participation by reducing barriers and improving communication about research opportunities and outcomes

By listening to the community, FightMND can make sure research investment delivers maximum impact, bringing us closer to treatments and a future free from MND.

Watch Now: 2025 MND Community Survey Webinar Recording

Missed the 2025 MND Community Survey webinar? Catch up on the insights that are shaping the future of MND research and care.

FightMND and MND Australia have released the recording of the 2025 MND Community Survey webinar, where representatives from both organisations unpack the survey findings and discuss how they’re informing research investment, care initiatives, and support strategies.

Watch the recording now and hear directly from the voices driving change for people living with MND.

Why I Run4Rossy: Lisa’s story

Lisa’s journey with Run4Rossy began at the very first event, which was held under unique circumstances thanks to COVID restrictions. “I rallied a few friends and family together, but separately, to support Chris and his family,” Lisa recalls. Yet, what started as a small circle quickly grew. When Chris Ross revealed his vision to make an even bigger impact the following year, Lisa didn’t hesitate to get the whole family involved. “We showed up, all of us, because this cause is too important not to.”

For Lisa, Run4Rossy is so much more than just a fundraiser. It’s a vibrant community event that brings people together in a meaningful way. “Whether you knew Chris personally, or his network, or if MND has touched your life or community, everyone can make a difference by showing up,” she says. She paints a lively picture of the event, highlighting its family-friendly atmosphere with great walking and running options, a buzzing family zone, live music and delicious food. “Each year it gets better and better!”

For anyone thinking about fundraising but unsure where to start, Lisa offers simple advice: “Sign up and join the community. Even buying a ticket helps. All ticket sales count toward our fundraising total. You make an impact just by being there.”

She’s constantly amazed by the generosity around her. “Year after year, friends, family, colleagues, even friends of friends show up to support this cause that’s so close to my heart. It’s a reminder of how many people in my own community have been touched by MND in some way.”

Get moving. Sign up for Run4Rossy Vol. 5

Now in its fifth year, Run4Rossy Vol. 5 is your chance to be part of something powerful. Every step you take helps fund groundbreaking MND research, projects that are changing lives today and fuelling hope for tomorrow.

Whether you run, walk, or simply show up in support, you’ll be helping the Run4Rossy community reach its incredible $1 million fundraising milestone. A tribute to Chris Ross’s spirit, the strength of his community, and the belief that no one should face MND alone. Registrations are now open. Join the movement, honour Chris’s legacy and help us continue the fight against the Beast.

FightMND invests $1.37 million into Care research and PhD Scholarships in 2025 

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

In 2025, we’re investing nearly $1.37 million into Care Research Grants and PhD Scholarships and Grants-in-Aid. Supporting both innovative care solutions and the next generation of MND researchers. By funding early-career scientists and clinicians, we’re helping build long-term research capacity in Australia and strengthening the pipeline of experts dedicated to tackling this disease.

This funding includes:

• $950,000 across four new Care-focused research projects.
• $199,000 to support a Clinical Care PhD Scholarship and Grant-in-Aid.
• $220,000 through the Angie Cunningham Biomedical PhD Scholarship and Grant-in-Aid, which supports Cure-focused research led by early-career researchers.

Since 2017, FightMND has invested more than $16.49 million into care-focused research and initiatives. This investment supports the development of clinical guidelines, communication tools, nutrition resources as well as establishing more personalised care for Australians living with MND.

By investing in care and cure research, as well as supporting the professionals driving this work, we’re committed to improving lives today while changing the future of MND.

Our 2025 Cure Research and Infrastructure grant recipients will be announced later this year.

Introducing the Chris Ross MND Research Grant

In 2025, the grant is awarded to:

Dr Alison Yaxley (Flinders University) and Ms Elizabeth Kapur (MND Clinic, Flinders Medical Centre)

Project: MND Ed – A Toolkit for Nutrition, Hydration and Swallowing Support This project is developing a user-friendly online toolkit for people with MND and their families. It will provide practical, evidence-based advice to help manage issues like swallowing difficulties and weight loss, challenges that significantly impact the health and quality of life of those living with MND.

Meet the 2025 Care research grant recipients

In addition to the Chris Ross Grant, three other projects will receive Care Research Grants in 2025.

Supporting the next generation of MND researchers

At the heart of FightMND’s mission is a commitment to not only accelerate discovery, but to nurture the people who will lead it. That’s why we invest in scholarships for early-career researchers. Giving them the support, resources and mentorship they need to help change the future of MND.

The Angie Cunningham Biomedical PhD Scholarship and Grant-in-Aid

Project: Genetic Modifiers and Drug Repurposing in MND

Xiaoyi’s project explores why some people with a known genetic risk for MND develop symptoms much later, or not at all. By analysing large-scale genetic datasets, she hopes to identify protective biological factors and existing medications that could be repurposed to delay or prevent the onset of MND. This work could lead to faster, more targeted treatment strategies.

Clinical Care PhD Scholarship and Grant-in-Aid

Laura’s project looks to improve how secretion and cough symptoms are managed in MND. These symptoms are common but hard to treat, leading to respiratory infections and emergency hospital visits. Laura’s project focuses on delivering better care, especially for people living outside major cities.

Creating hope through research

Since 2014, FightMND has invested over $117.3 million into research and care initiatives supporting Australians living with MND.

These new projects not only build on the remarkable progress already made, they help foster the next generation of MND research leaders. By supporting early-career scientists and clinicians, we’re strengthening Australia’s research capacity and ensuring that innovative, life-changing work continues into the future.

Australia is now recognised as a global leader in MND research. This is because of the brilliant minds, bold ideas and unwavering community support driving us forward.

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

Running in Steven’s memory: Michelle’s story 

Michelle Stepien never saw herself as a runner. Growing up the idea of running for enjoyment seemed foreign. But when COVID hit she decided to give it a try. What started as a simple way to stay active quickly became something more. An outlet that left her feeling strong, capable and empowered. Running was something Michelle did for herself.

AN MND Diagnosis oceans apart

In May 2021, Michelle’s oldest brother, Steven, was diagnosed with motor neurone disease (MND), also known as ALS. Living in Los Angeles with his wife, he received the devastating news during the uncertainty of the COVID-19 pandemic. With Australia’s borders closed, Michelle and her family, based in Melbourne, couldn’t be by his side until early 2022.

By then, MND had already taken so much.

“Steve was already confined to his wheelchair full time, unable to walk, limited mobility in his arms and significant loss of speech,” said Michelle.

During difficult moments running became more than just an outlet for Michelle. It became a way to process. To cope. She ran to clear her mind. To remind herself that movement is a gift.

“When I would find myself struggling to cope, understand and accept that time with Steve was running out, I would go out for a run. Sometimes for fun and sometimes for sanity, either way it was an outlet I picked up and loved how it made me feel.”

Running with purpose

Running is something Michelle does for herself. She loves how it makes her feel. Strong. Powerful.

Fundraising for FightMND has added an even greater purpose to her running journey. By raising awareness and funds, she hopes to support others impacted by this devastating disease while honouring Steve’s legacy.

“Knowing that my efforts to raise awareness and funds makes an impact, makes me feel so many emotions. I’m grateful that I can do what I enjoy and combine it with a cause that I care so much about. I’m proud that I have turned one of the most painful experiences in my life into an opportunity to honour my brother Steve.”

When asked what she’d say to others thinking of joining the fight, Michelle says go for it! Running is hard, but it’s also a privilege. There are many opportunities to sign up as a charity place runners and take on a challenge that’s bigger than themselves.

“I think others should get behind FightMND and sign up to become a charity place runner because you’re doing it for a reason that’s so much bigger than meets the eye. Running is not easy and being able to run means your body allows you to move and do great things. What a personal achievement in itself!”

Every effort counts

Over the past few years, Michelle has seen incredible support from friends, family, and even strangers who have reached out to contribute to her fundraising efforts. Her best friends, Sam and Crystal, have been by her side since day one, running alongside her, pushing her forward, reminding her of her strength.

“I wouldn’t be so far in my running journey if it wasn’t for Sam and Crystal. I remember the first year I signed up to do the Run Melbourne 5km event in 2022 to honour Steve. I created the team ‘Steps for Steve’ to raise money for FightMND. I mentioned it in conversation with Sam and Crystal and they both quickly signed up and helped raise funds.”

“Each year they’ve gotten behind me and showed me their support and love. Always encouraging me on runs to keep going whenever I want to cut it short, stop or think that I couldn’t do it. Like doing our first half marathon last year or reminding me that I am capable to do a full marathon!”

Together, they’ve raised over $7,000 for FightMND. Proof that every effort, no matter how big or small, makes a difference.

Turning experience into purpose

Michelle shares a simple message. If it’s fear or self-doubt holding you back from your next challenge, set those doubts aside and just go for it! Run that marathon, sign up for the charity event or take on a personal goal. Just start. Life moves unpredictably, and you never know what tomorrow will bring.

“I never thought anyone I knew would be diagnosed with MND, let alone my brother. I am so scared at running the full marathon at Melbourne Marathon but why should I not just give it a go!?”

Michelle fundraises for FightMND to transform something that once felt unbearably painful into something meaningful. To make a difference. To honour her brother. Most importantly, it is her way of reminding others that there is always a purpose to be found in every step forward.

Join the fight

When you fundraise for FightMND, you’re doing more than raising vital funds. You’re helping us invest in groundbreaking research and projects supporting Australians living with MND. Whether it is running a marathon, hosting a trivia event or celebrating a special occasion, there are many ways for you to join the FightMND Army and help beat the Beast.

Check out our fundraise for us page learn more about how you can make a difference in this fight against MND.

Your Digital Beanie. Your way. And why it matters. 

This Big Freeze, FightMND is taking the iconic blue Beanie virtual. And it’s never been more personal.
Our Digital Beanie is a new way for you to show your support for those living with motor neurone disease (MND) and become part of the growing FightMND Army.

Whether you’re cheering from the stands or showing your support from halfway around the world, the Digital Beanie lets you join the fight in a way that’s uniquely yours. And every single one makes a difference.

Personalise your Beanie. Your way.

The Digital Beanie is your own custom-made badge of honour. A simple yet powerful way to stand with those fighting MND, and to tell the world you’re part of something bigger.

It starts with the Big Freeze 11 Beanie. Add a name. Yours, a friend’s, someone from your family, or someone you’re honouring. Then make it your own with exclusive pins that reflect your story, your memories, your fight. Your Digital Beanie is more than a fun design. It’s a statement of support and solidarity.

And here’s where it gets even bigger. Behind every personalised Beanie is a ripple of change. Every Beanie worn and shared helps grow the FightMND Army. One name, one story, one supporter at a time. So wear it proud, share it wide and help recruit your crew to join the fight. Together, our small actions can mean everything.

Why it matters

Motor neurone disease is relentless. It robs people of their ability to walk, talk, eat and eventually breathe. All while their mind stays sharp. It’s a cruel disease that doesn’t let up. But neither do we.

Every Digital Beanie purchased is a step forward. It’s a $25 donation that funds life-saving research, new treatments and support for families affected by MND. Every $5 pin adds more fuel to that mission.

But more importantly, your Digital Beanie shows people with MND that we are standing with them. Each name added, each pin placed, each Beanie downloaded and shared on social media is a reminder that we’re in this fight together.

Maybe you’re doing it for your dad. Your best mate. A sporting hero. Or maybe you’re just one of the many who refuses to let this disease define what comes next. Whatever your reason, your Digital Beanie tells a story. And that story helps change lives.

Let’s fill the MCG!

This year we’ve set ourselves a bold goal. To put a Digital Beanie on every seat of the MCG!

Imagine that. A virtual stadium filled with personalised Digital Beanies. Each one representing another member of the FightMND Army. Together they form a powerful symbol of what happens when a community comes together with purpose.

We might be spread across the country, or the world, but this is how we stand side by side in the most iconic stadium in the land, united by one goal: to one day live in a world free from MND.

Be a part of it!

Grab your Digital Beanie now at bigfreeze.com.au. Make it yours, download it, share it online and tag @fightmnd to show the world you’re in the fight.

Feeling bold? Rally your team, your family, or your workplace and grab a Digital Corporate Box. A chance to lead from the front and make an even bigger impact.

Motor neurone disease doesn’t stop. But neither do we. With every Digital Beanie, we build hope. With every name, we celebrate our collective power to make change. And with every share, we grow a community that refuses to give up.

Let’s make this Big Freeze the biggest one yet.

Honouring Lyndel’s legacy through volunteering: The Baldwin family’s story

A motor neurone disease (MND) diagnosis doesn’t just change one person’s life. It touches everyone who cares for them. This is something the Baldwin family knows very well. When their mother, Lyndel, was diagnosed with MND in October 2022 her children and their partners; Daniel and Liss, Carey and Cathryn, Paul and Rach, and Steph along with her 11 grandchildren, stood by her side throughout her battle with the Beast.

As she lived with MND, Lyndel’s family saw the things MND took away, not only from her, but from her whole family, her son Daniel explains.

“Mum lost so many opportunities because of MND. She wouldn’t see her family grow older. She couldn’t see or celebrate our successes. She couldn’t grow old gracefully. Motor neurone disease is a death sentence. The only thing it gave her was the knowledge that her life was going to end sooner than she ever imagined.”

Through all of this, Lyndel’s strength was unwavering, and the love and support of her family empowered her to keep fighting. Even after her passing, her resilience fuels their commitment to make sure no other family faces the same heartbreaking journey.

“Despite the challenges she faced, Mum’s courage and resilience shone through every day. Her unwavering spirit has left an indelible mark on our hearts and motivated all of us to do whatever we can to support research and raise awareness so that one day, no family has to endure what we did,” said Paul.

Daring to do by volunteering

For the Baldwin family, becoming Big Freeze volunteers is a way for them to honour their Mum’s legacy and reclaim a sense of purpose after MND took so much from their lives. It provides them with a meaningful way to channel their grief and frustration into action, giving them the chance to support others facing similar battles.

“Volunteering gives us the opportunity to fight back against MND. It helps transform the frustration and helplessness we felt as we watched Mum deteriorate into something empowering,” said Steph.

“Despite our grief and loss, we remain united and driven to take action against MND. Volunteering brings the family together to honour Mum’s experience and advocate for those facing similar challenges. She would have loved seeing us come together and give back in this way. She loved helping others and had an unquenchable empathy for those in need. This is our way of ensuring her legacy of helping others lives on.”

In encouraging others, Carey believes that volunteering is a significant way to contribute to a cause that benefits so many people.

“While asking for donations can be challenging and uncomfortable, the motivation to do so is simple. Raising awareness and funds for MND research can change lives and lead to a cure. Any anxiety we have about getting out there, pales into insignificance when you compare it to what those fighting MND are going through. That keeps us motivated to carry on in Mum’s memory.” 

Volunteer for Big Freeze 11 and make a difference in the fight

The Big Freeze wouldn’t be the same without our amazing volunteers! Thanks to their dedication, we can continue to invest in vital MND research as well as programs to support those living with MND.

Want to get involved? We’d love for you to live it forward for those who can’t and volunteer with us during Big Freeze 11! By becoming a volunteer, you’re helping FightMND work towards its vision of a world free from MND. Your support makes a huge difference!

Curious about what’s involved? Head to our Volunteering page to discover how your time and effort can help drive the fight against MND. We’re excited to have you join the team and live it forward for those in the fight against MND during Big Freeze 11!