Janine and Paul’s story: A legacy of love, courage and hope
Janine had a rare gift. She made people feel seen and cared for. At Bunnings, where she became affectionately known as “Mum”, her kindness reached far beyond the Special Orders Department. Whether she was guiding a tradie through a complicated job or helping a first time DIYer find the courage to tackle a project, Janine gave everyone her time, her patience and her belief in them. As a union representative, she fought fiercely for her team, protecting and uplifting colleagues as though they were her own children. “Janine was always looking to help others,” recalls her husband, Paul.
At home, Janine and Paul built their lives around spending time together. With both working shift jobs, they planned their days so one of them was always there for their children. Family meals, shared routines, time together, these were the things that mattered most.
When Janine received her motor neurone disease (MND) diagnosis, she saw the shock and fear in her family’s faces and knew she had to put on a mask of bravery. Rather than retreat, the family chose to embrace the time they had. They cruised through the Pacific Islands, explored Tasmania in a campervan and travelled around New Zealand. Even when a wheelchair became part of the journey, Janine’s determination never dimmed. She was determined to create lasting memories with those she loved.
True to her nature, Janine focused on helping other people living with MND. Using eye‑gaze technology to stay connected, she made it her mission to raise awareness of MND; not just the physical toll, but the emotional weight carried by families and loved ones. She campaigned for funding, support programs and research. “She wanted to raise awareness and funds to improve other people’s quality of life, but also to find out what causes MND and eventually find a cure, giving hope to future families,” Paul explains. “She said this is why she kept fighting – to give others hope.”
Janine passed away in October 2014, but her legacy lives on. Inspired by her decision to include charities in her Will, Paul has done the same; ensuring her compassion continues to ripple forward, helping future families through his gift to FightMND.
When asked about his favourite memory of Janine, Paul’s face lights up as he recalls their sons’ wedding. “I got her up on the dance floor. I stood her up and placed each of her feet on my own, holding her tight as we slowly danced. We were the only people dancing at first, but then everyone joined in, knowing that if Janine could dance, then they all could,” he explains.
It’s a perfect reflection of who Janine was. Someone whose courage and determination inspired everyone around her to believe that anything was possible.
Leave a gift that fuels the fight for a cure
Just like Janine and Paul, you can help bring us closer to a world where MND no longer steals the lives and moments we cherish.
By including FightMND in your Will, you help fund vital research, assistive technology and support programs that bring hope to people living with MND and their families. Your gift, no matter the size, becomes a powerful statement for future generations.
Learn more about how you can leave a gift in your Will for free to FightMND. You may wish to consult your solicitor or choose to write an online Will for free via Safewill, EveryWill (formerly Gathered Here) and Willed until 30 March 2026. Your support brings us closer to a world where MND no longer exists.
Honouring loved ones through volunteering: Kerry Muratore’s family at the Big Freeze
Each King’s Birthday, the MCG fills with the roar of Collingwood and Melbourne fans, but for Kerry Muratore and her three sons, 16-year-old Antonio, 13-year-old Marco and eight-year-old Mikey, the day is about more than football. Donning their blue Beanies and armed with donation tins, they join thousands of supporters in the FightMND Army, united in a mission to take a stand in the fight against the Beast that is motor neurone disease.
For the Muratores, volunteering at the Big Freeze is deeply personal. Their mum and yiayia, Mandy, was diagnosed with bulbar onset MND in 2020. She passed away just 16 months later at 62 years of age. She left behind her husband Michael, Kerry and her brother Trifon, son-in-law John, daughter-in-law Dimi and five grandchildren. “We volunteer in her memory, and the hope that one day a cure is found, so other families don’t have to experience the Beast that is MND,” Kerry says.
Volunteers leading the charge
For Kerry, Antonio, Marco and Mikey, the Big Freeze is more than fundraising. It’s about honouring Mandy, being part of something meaningful and connecting with people who care. Every member takes something different away from the experience.
Mikey loves the hands-on excitement. “I like selling Beanies at the MCG in June,” he says. “It is a good way to spread awareness about MND, with many people being at the MCG,” shares Marco. Antonio finds purpose in every interaction. “It helps bring awareness to MND and is a meaningful way for me to honour my yiayia,” he explains. Kerry reflects on the experience, “Honouring my mum and raising as much as possible for a great cause.”
For the family, volunteering is deeply rewarding. When asked to sum up the experience in one word, Mikey says “good,” Marco calls it “enjoyable,” Antonio “meaningful,” and Kerry simply says “rewarding.” It’s a day that combines fun, connection, and purpose, where every beanie sold and every donation collected feels like a step toward making a real difference.
A call to arms: encouraging others to sign up
The Muratore family wants others to experience the same sense of reward that comes from helping at the Big Freeze. When asked what they would say to someone thinking about volunteering, Mikey encourages, “If you want to be a volunteer for MND, you need someone to shake the cans and sell the beanies. It’s lots of fun, so have a try.” Marco adds, “Try it, even if it’s one year, as you meet lots of new people and it’s a great experience.” Antonio and Kerry both agree: “Give it a go, it’s such a rewarding day doing something positive that has a lot of meaning to many people.”
Become a volunteer during Big Freeze 12
This Big Freeze 12, you can join Kerry, Antonio, Marco and Mikey in making a difference in the fight against MND. We have volunteering opportunities across the country. From selling Beanies to collecting donations to raising awareness, you can help FightMND strive for a world free from MND. Expressions of interest for volunteering at Big Freeze 12 are now open. Register your interest today and help us move closer to a future without MND.
Dr Sam Barton and the mini-brains unlocking big answers in MND research
Inside The Florey Institute neuroscientist Dr Samantha Barton is leading an ambitious and imaginative project called Using iPSC-derived Organoids to Understand TDP-43 Pathology.
Her goal? To better understand how motor neurone disease (MND) starts, spreads, and wreaks havoc on the nervous system. To do it she using something straight out of a science fiction novel. Mini-brains.
These mini-brains, or organoids, are made from the stem cells of people living with MND. They’re three-dimensional clusters of living cells that mimic the behaviour of brain tissue, allowing scientists to watch how disease pathways unfold in real time.
It’s a bold new way of studying MND. One that could help researchers uncover what triggers the disease and, one day, lead to treatments that slow or stop it.
“Our goal is to understand what’s actually causing MND,” says Sam. “Only by uncovering the biology that drives disease onset and progression can we hope to find stronger targets for treatment.”
Understanding how MND spreads
MND doesn’t just affect motor neurons, the nerve cells responsible for movement, speech and swallowing. It also impacts the neighbouring support cells that keep those neurons alive and healthy.
Sam’s research focuses on TDP-43, a sticky, toxic protein that builds up inside cells in nearly all people living with MND. Using organoids created from patient-derived stem cells, her team can observe how TDP-43 spreads between different cell types, disrupting the delicate balance of the nervous system.
This approach provides an unprecedented window into how MND progresses inside the human body. By identifying the key processes driving that progression, Sam’s team hopes to reveal new targets for drugs that could protect neurons and preserve function for longer.
“The establishment of our ‘mini-brain’ model will allow mechanistic insight into the drivers of MND,” she explains. “That means we’ll be able to identify novel targets and adapt them into a drug screening platform.”
Collaboration at the cutting edge
This project brings together some of Australia’s brightest minds in MND research. Sam’s team at The Florey is collaborating closely with researchers Dr Rebecca San Gil and Professor Adam Walker from the University of Sydney, alongside Dr Dmitry Ovchinnikov, combining world-leading expertise in stem cell biology and mouse modelling.
Beyond the lab work, the project is helping to build research capacity by training new scientists, including a PhD student who is relocating to Australia to join the team. Together, they’re creating a model that will serve as an invaluable resource for MND researchers around the world.
Powered by a 2025 FightMND IMPACT Grant
This research has been made possible through a 2025 FightMND Impact Grant, supporting innovative projects that strengthen the global push to understand and treat MND.
“FightMND’s support enables collaboration between leading MND researchers across Australia,” says Dr Barton. “It funds both our researchers and our research — helping us make discoveries that could one day translate into new treatments.”
Hope for the future
For Sam and her team, the science is deeply personal. The team at The Florey often hosts visits from people living with MND. Moments that remind them why their work matters.
“I’m always humbled by how supportive they are of us and our research,” she says. “Even though our experiments might not help people living with MND right now, their encouragement inspires us to keep going. One day, we want to proudly share how our discoveries directly led to new drug options that change lives.”
Sam’s long-term goal is to uncover the hidden drivers of MND and pave the way for new, life-changing therapies. Each mini-brain grown in the lab brings that vision one step closer. Proof that even the smallest discoveries can make a world of difference.
Supporting research to beat the Beast
Dr Sam Barton’s research is helping scientists better understand how MND starts and spreads. She is just one of many researchers whose work is made possible through FightMND funding. Research like this is vital to improving treatments and, one day, finding a cure for the Beast. But research takes time, and ongoing support.
You can help fund this vital work. A donation to FightMND supports researchers like Sam and brings us closer to a future free from MND.
2025: Beanies, Drives, research and fighting MND together
What a year 2025 has been! As the year draws to a close, it’s time to press play on our highlights. From the icy thrills of Big Freeze 11 to creative DIY Big Freeze and a journey from the trees to the seas with Daniher’s Drive, Australians have shown that when it comes to fighting MND we don’t just take part. We take the plunge.
The year our Patron became Australian of the Year
The year began with a milestone that set the tone for 2025. Our Co-Founder and Patron, Neale Daniher AO, was named Australian of the Year. This honour recognised his unwavering leadership and relentless advocacy for motor neurone disease research.
Since being diagnosed with motor neurone disease (MND) in 2013, Neale has refused to let the Beast define him. Alongside Pat Cunningham and the late Dr Ian Davis (OAM), he co-founded FightMND. From the icy thrills of the Big Freeze to the road-tripping adventures of Daniher’s Drive, and many events in-between, Neale has inspired Australians to rally together, support research and fuel hope in the fight against the Beast.
Your community, your freeze, your impact
This year, Big Freeze in Your Community dared you to do and team up in the fight against the Beast. And you didn’t hold back.
From schools to workplaces, local sporting clubs to family backyards, Aussies across the county embraced the challenge with imagination and determination. Every DIY Big Freeze and pair of Socks worn was a reminder that when Australians step up together, real change happens.
You all continue to set the DIY Big Freeze bar high! Our team loves seeing how you bring a local twist to the battle against the Beast. We can’t wait to see what you’ll do for Big Freeze 12 in 2026.
Live it forward: Big Freeze 11 makes a splash
The MCG was a sea of blue Beanies as fans gathered for Big Freeze 11, embracing this year’s theme, Live it Forward. From the moment the crowd filled the stands, the energy was electric. Everyone united in the fight against the Beast and ready to cheer the sliders into icy glory.
The plunge itself was nothing short of legendary, with our Sliders embracing the Aussie Icons theme. Swimming superstar Ariarne Titmus OAM kicked things off with a throwback as Olivia Newton-John, while cycling champ Cadel Evans AM showed his lighter side as Max Gawn, who, in big-hearted fashion, was at the bottom of the Slide cheering him all the way down! AFL icon Peter Daicos OAM brought his signature flair and showmanship as the unforgettable Heath Ledger, leaving fans in awe of his style and theatrics. Matt Nable rocked the slide as AC/DC’s Angus Young in a deeply personal tribute to his brother, who sadly passed from MND in 2024.
Liz Watson dazzled as Margot Robbie, while Matt Shirvington brought the thunder as Chris Hemsworth’s Thor. Extra props for agreeing to don the costume (or at least the wig) on his flight home to Sydney! Alyssa Healy had the crowd in stitches as Magda Szubanski’s iconic Sharon Strzelecki, pash rash and all! Aaron Davey paid homage to a football great as Michael Long, and Craig Lowndes OAM went full throttle as Mad Max. Mark Taylor AO rounded out the line-up, spinning into icy glory as the master of spin, Shane Warne, his former teammate, making the plunge all the more special.
The day also had moments of pure emotion, with Neale’s lap of honour leaving everyone in awe, a moving reminder of courage, resilience, and why we come together each year for this incredible cause.
At the heart of Big Freeze 11 were all of you. Whether you donned a Beanie in the stand, purchased a Digital Beanie at home, or were volunteering on the ground. Your support turned the country blue, showing that together, we’re living it forward and standing strong in the fight against the Beast.
Big Freeze fever sweeps the nation
2025 has been another unforgettable year for the State Freeze! Queensland, Western Australia, and South Australia brought their A-game once again with epic state freeze events.
From coast to coast, fans showed up in droves to support FightMND, and the energy was off the charts. Huge thanks to the Adelaide Crows, West Coast Eagles, and Brisbane Lions (back-to-back Premiers – hear the roar!) for helping us turn freezing moments into real impact for the MND community.
A special shoutout to all the incredible volunteers across the country who helped sell Beanies and collect donations at the State Freezes. Your support makes it all possible.
Get ready… State Freezes are coming back in 2026! Stay tuned to find out what’s happening in your state.
Second Global MND Research Roundtable drives action and collaboration
Fast forward to September 2025, and the world’s top MND researchers, clinicians, and advocates gathered for the second Global MND Research Roundtable, building on the momentum from 2024. Over two days, they tackled five critical priorities: refining biomarkers, understanding asymptomatic disease, developing better human models, addressing under-represented populations, and bridging preclinical discoveries into clinical trials.
The event sparked fresh ideas, challenged assumptions, and led to tangible outcomes: new working groups are forming across all priority areas, strategies are being translated into action and virtual follow-up sessions are planned. Stay tuned for more updates on the work of the Roundtable delegates.
Challenging 27 in the fight against MND
September also saw the return of Challenge 27, as Australians from coast to coast took on the challenge their own way to help fund vital MND research. What began as a simple call to move quickly grew into countless personal journeys. Sunrise walks, after-work runs and creative daily movements, all driven by a shared determination to fight MND.
Why 27? It represents the average number of months someone lives after an MND diagnosis. Faced with that reality, our community chose action.
Leading the way were our Challenge Ambassadors. Jack Riewoldt encouraged people to give just 27 minutes each day, proving small efforts can have big impact. Leanne Sklavenitis, living with MND, completed 27 different movements, showing remarkable strength and adaptability. And Katrina Blowers challenged 27 kilometres in honour of her mum, who passed away from MND in 2024.
Together, these stories, and the many others like them, transformed 27 into something powerful. Every step, stretch and kilometre helped honour loved ones, fund vital research and push us closer to a future free from MND.
Daniher’s Drive travels from the trees to the seas
October 2025 saw Daniher’s Drive set out on its epic journey, From the Trees to the Seas, with more than 220 drivers departing from Heidelberg Golf Club, embracing the road, the challenge, and the cause.
On day one the convoy paused at Assumption College, Kilmore, where founder Neale Daniher AO experienced a heartfelt reunion with his old school and the pavilion bearing his name. It was a special moment which set the tone for this year’s Drive.
From winding forest roads to sparkling coastal stretches, every mile carried stories of community and hope. Capping off the event was the Legends of the land Down Under fancy dress gala where, true to tradition, the crowd belted out Neale’s favourite song, Mr Brightside by the Killers.
From our Drive participants and sponsors to the communities who welcomed us with open arms, thank you to everyone who shared the 2025 Drive. We can’t wait to continue the journey in South Australia in 2026.
Record Investment in MND Research in 2025
In 2025, FightMND committed a record $22.9 million to MND research and care projects. This year, we’re proudly supporting 21 innovative research projects, from clinical trials and cutting-edge drug development to projects seeking to unravel the complexities of MND. This year’s investment also aims to empower emerging and established researchers to push the boundaries in the fight against the disease.
We also invested $1.4 million into vital care projects focused on improving day-to-day support, nutrition, ventilator support and equitable care for Australians living with MND.
Each project and initiative brings us closer to breakthroughs, better care and a brighter future for the MND community. Curious to learn more about this year’s funded projects? Check out our News section to learn more about the research your support is helping.
Thank you for all your support in 2025!
It has been another incredible year in the fight against the Beast.
To everyone who volunteered, hosted a DIY event, participated in a Community Round, joined us on Daniher’s Drive, purchased socks, grabbed a Beanie, or donated throughout 2025, thank you.
Thanks also goes to our amazing corporate partners who continue to stand shoulder to shoulder with us.
It takes people to win this fight. Everything we’ve achieved this year has been because of you. Your support helps researchers continue their work towards better treatments, and one day, a cure for MND. More than that, it shows those living with MND, their families, and carers that they are not alone.
While progress continues, the journey is far from over. So, we keep fighting. Keep working towards our vision of a world free of MND.
Mark my words: How Tasmania’s equipment library transforms life for people living with MND
For Tasmanians living with motor neurone disease (MND) staying safe, independent and connected to the community can depend on having the right equipment at the right time. But for many, accessing essential assistive technology can be painfully slow. This is why MND Tasmania’s equipment library has quickly become a vital lifeline.
Chris Symonds knows firsthand how essential this service is. As President of MND Tasmania, Chris has been instrumental in the establishment of the state’s equipment library. “Equipment libraries are vital in precuring new or used assistive technology and then distributing these to people living with MND or Kennedy’s Disease,” Chris says. “For those over the age of 65 who are ineligible for NDIS funding, MND Tasmania provides this essential equipment at no cost.”
The library provides a wide range of equipment, including lift chairs, adjustable beds, power wheelchairs, bathing supports and specialist communication or breathing devices. Everything that can help someone stay safe and independent for as long as possible. People are connected to the service through their MND Advisor, who works with them to identify what equipment they need and when they need it most.
Demand is constant, and every situation is unique. “For those living with MND, the rate of progression and areas affected vary from person to person. This means individual equipment needs vary,” Chris explains. That’s why the library is shaped not only by clinical advice, but by the lived experiences of people with MND. Ensuring the support provided truly meets their changing needs.
For families navigating a rapidly progressing disease, timely equipment can be life-changing. It helps people maintain mobility, continue daily routines, stay socially connected and live safely at home for as long as possible. But when access is slow, abilities can be lost before the needed equipment arrives. The equipment library exists to close this critical gap, restoring dignity, independence and a sense of control when it’s needed most.
Its impact comes from speed. “The aim of our equipment library is to provide items quickly,” Chris says. “Other state-based or NDIS approvals can have slow responses to the need and often when the item arrives the person’s condition has progressed and is ready for the next item.”
Chris has experienced this delay himself. Living with Kennedy’s Disease, an inherited disease affecting the neurones in the brain, he knows firsthand how importance timely access can be. Under the NDIS he waited six months and 11 days for his power wheelchair to arrive, even though the approval itself took only 15 days. In contrast, his cousin, over 65 and not on the NDIS, received a similar second-hand power chair through an equipment scheme in just two weeks. “It did the same job. Speed matters.”
Operating the library in a small state brings challenges, particularly the high costs of maintaining specialised equipment. That’s where strong partnerships are essential. “MND Tasmania works closely with our partner, Country Care, to deliver the service. This partnership is essential to the delivery of the library,” Chris says. By combining Country Care’s logistical expertise with MND Tasmania’s community focus, the program has built a solid foundation.
Community donations and support are also critical to the library’s growth. FightMND is investing in this initiative, helping MND Tasmania strengthen its equipment pool and accelerate access for those who need it most.
Chris’s message to Australians is clear. “MND progresses quickly. Equipment libraries help people stay safe at home and active in their community not stuck in hospitals or aged care. Supporting these libraries is supporting dignity, independence and quality of life.”
Thanks to Chris and his team this equipment library is making a meaningful difference for Tasmanians living with MND.
Mark My Words: Your support powers projects supporting Australians living with MND
MND Tasmania’s equipment library is a lifeline, providing critical equipment quickly so people affected by MND can maintain their independence and dignity. Your support helps FightMND fund essential projects like this, empowering families and improving care across Australia.
Mark my words: together, we can make a difference. Every donation accelerates research, funds innovative care and empowers people living with MND. Join the fight today. Together we can create a future without MND.
Mark My Words: How harnessing AI could transform night-time breathing support for people living with MND
Every day the teams at The Institute for Breathing and Sleep and the University of Melbourne at Austin Health work closely with people affected by motor neurone disease (MND) to navigate one of the most fundamental challenges of the illness. Breathing.
For many people with MND, restful sleep depends on non-invasive ventilation (NVI). When everything works smoothly, NIV can restore comfort, strengthen quality of life and, in some cases, help people live longer. But when the technology slips out of sync with a person’s breathing pattern, the benefits can quickly unravel. Known as patient–ventilator asynchrony, the issue can leave people frustrated, exhausted and often hesitant to continue using NIV at all.
Professor David Berlowitz, together with the Victorian Respiratory Support Service team, have seen the challenges of patient-ventilator asynchrony firsthand. They work closely with Australians affected by MND to manually correct unsychronised ventilation, and while their manual adjustments help many people, they knew a more seamless and dependable approach was needed.
Enter Anthony Stell and the Computing and Information Systems team from the University of Melbourne, led by Professor Uwe Aickelin, engineers driven to use technology for human good. The worlds of clinical care and AI came together. David understood the problem. Anthony and the team knew how to build the solution.
Together, they created a collaborative research project to develop algorithms which mimic what expert clinicians do manually. Using data from a large, multi-centre clinical trial across Australia and Canada, the team is training AI models to detect changes in patients’ breathing, with an aim to automatically adjust NIV in real time.
The trial is guided by a stakeholder advisory committee, ensuring that people living with MND and their families help shape every stage of the research. Once the algorithm is accurate and robust, the team plans to work with the committee to support implementation.
While the engineering is complex, the motivation is deeply human. David explains, “We sleep for one-third of our lives, and we all understand how a good sleep makes us feel better.” He knows that when NIV works seamlessly, individuals and families notice the difference every morning. “If our project is as successful as we hope, the person with MND and their families should notice the difference.”
The team is already looking ahead. With promising early results, they aim to integrate the AI directly into ventilator devices. “Next steps would be the integration of this software algorithm in the ventilators themselves,” Anthony says. A key step to bringing the innovation from the lab into homes worldwide.
Along the way, the partnership between clinicians and engineers has proven invaluable. Anthony reflects, “The capacity building between clinical and engineering domains is enormous.” For David, the project is a natural continuation of decades of listening, learning, and responding to the needs of people living with MND. “This research question has emerged from our program of clinical and research work with people living with MND,” he explains.
None of this progress would have been possible without FightMND’s support. “Without FightMND funding this would have been a much greater challenge to achieve,” David and Anthony emphasise. Looking ahead, the pair see even greater possibilities for AI. “Our hope is that similar uses of machine-based approaches can not only support treatments but be used to improve the process of research into deep understanding of MND and its causes.”
Professor David BerlowitzAnthony Stell
Mark My Words: Your support powers vital research
David and Anthony’s work is just one example of how technology, including AI, can improve the quality of life for Australians living with MND. This year, you can help fund the next wave of vital MND research. Every dollar raised helps FightMND support projects that improve care today while moving closer to the breakthroughs of tomorrow.
Every donation accelerates research, funds innovative care and empowers people living with MND. Mark my words: your support can change lives. Stand with Australians affected by MND. Together, we can keep pushing forward, investing in bold research, supporting families and creating a future without MND.
When Neale Daniher AO was diagnosed with motor neurone disease (MND) in 2013, he began living with a disease that slowly takes away the very things many of us take for granted. The ability to speak. To move. To eat. To care for ourselves. It is relentless, isolating and unforgiving, a Beast that takes and takes.
But Neale chose not to give in. Instead, he turned his personal challenge into a mission to help all Australians affected by MND. Alongside Dr Ian Davis and Pat Cunningham, he founded FightMND and began working their vision of a world free from MND.
This year, Neale experienced a moment that reminded him of why the fight matters. Using new technology and recordings from his coaching days, he heard his own voice again. Not the computer-generated kind he’s been relying on, but the one that sounded like him. Felt like him. “It wasn’t perfect, but it was personal. And it meant something,” he says.
While this technology wasn’t specifically developed for people with MND, for some, like Neale, it has become a powerful tool. And while it is not a medical breakthrough, it is a reminder of what research can do with time, funding and belief. “Mark my words, every step forward brings hope and progress closer,” he says.
Living with MND brings daily challenges that can change how people move, speak and connect with the world around them. Everyday tasks like holding a cup, walking or speaking become difficult and independence harder to maintain. That’s why investing in care-focused research is so important. FightMND supports research that explores ways to improve care. This includes research into the ways technology can help deliver better quality care, updated care guidelines, and better access to essential equipment. These projects help Australians living with MND maintain independence, improve quality of life, and give families the support they need every day.
Mark My Words: You Can Make a Difference
This year, Australians have the chance to stand alongside Neale and help fund the next wave of vital MND research. Every dollar raised will help drive progress. Improving how people with MND are supported today, while moving us closer to the breakthroughs of tomorrow.
Neale’s fight is a message of choice. “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.”
Every donation accelerates research, funds innovative care and empowers people living with MND. Mark my words: your support can change lives. Stand with Neale and Australians affected by MND. Together, we can keep pushing forward, investing in bold research, supporting families, and changing the future for generations to come.
Inside Marco Peviani’s quest to turn stem cells into lifelines for MND
Imagine being able to repair the nervous system from the inside out. That’s the goal of Associate Professor Marco Peviani and his team at the University of Pavia in Italy. They’re working on a bold new way to treat motor neurone disease (MND), using a person’s own stem cells to help protect and repair damaged nerves.
The science behind the therapy
This research project, titled Engineering hematopoietic stem cells to empower the neurosupportive and immunomodulatory properties of microglia: a novel stem cell gene therapy strategy for motor neuron disease, aims to turn stem cells into powerful allies against MND.
Marco’s team takes stem cells from a patient’s own bone marrow and carefully reprograms them into microglia-like cells. Special cells that help protect and repair the brain and spinal cord. When these modified cells are returned to the body, they have the potential to create a safer, more supportive environment for nerve cells. The goal is to slow down, or even reverse, some of the nerve damage caused by MND.
“Our project aims to optimise and validate a novel therapeutic approach for MND. There are already successful examples of this strategy being applied to treat other neurodegenerative disorders, with promising evidence of clinical translatability. Therefore, we are confident that the results generated within the framework of this grant will be instrumental in supporting the future clinical deployment of stem cell-based therapies for MND.”
This innovative research is supported by a 2025 FightMND IMPACT Grant. The Grant will help the team continue this vital lab testing and support young researchers building their careers in the field.
Testing in the lab
The project is in its preclinical stage. This means that testing in the lab is taking place before the project can proceed to clinical trials. The team is carefully studying how the modified stem cells behave, how safe they are and whether they can protect nerve cells effectively.
Through this project the team is conducting a range of experiments, from growing the cells in controlled lab environments to test how they interact with damaged nerve cells. By measuring how well the cells survive, integrate and perform their protective functions, the researchers can understand whether this therapy could work in people.
These careful steps help ensure that the therapy is as safe and effective as possible before it moves closer to clinical trials. ork promises to make a tangible difference in the daily lives of Australians living with MND.
Listening to patients and families
Marco and his team know that the people most affected by MND, patients and their families, have valuable insight into what research is needed most.
“I have always appreciated the genuine and active involvement of people living with MND and their families during international and national ALS/MND congresses. Sharing the results of our research at these events has provided us with valuable insights and feedback.”
By talking with patient groups and attending events worldwide, the team learns what challenges matter most to those living with MND. This helps the researchers make sure their work focuses on therapies that could truly improve quality of life, not just lab results. Staying connected to the patient community keeps the team motivated and grounded in the real-world impact of their research.
Looking ahead: Clinical trials and training
If the therapy proves successful, the next step will be partnering with clinical and commercial teams to start a clinical trial. Marco hopes this research will show that stem cell and gene therapies can help many forms of MND, giving more patients access to life-changing treatments.
The project also trains the next generation of MND researchers. Post-graduate and post-doctoral students work closely with Marco’s team, gaining hands-on experience in tackling one of the most challenging neurological diseases.
Inspired by mentors and patients
Marco’s journey into MND research began early, inspired by mentors and colleagues who encouraged him to think creatively and find new solutions.
“I am deeply grateful to all the mentors I have had the good fortune to meet throughout my career who introduced me to the MND field and stem cell research. I must thank all of them for the enthusiasm for research that they so generously shared.”
Over the years, Marco has also been inspired by the people living with MND and their families. Meeting them through patient associations showed him the real human side of the disease. Witnessing their strength motivates his team to work harder and ensures that the research always focuses on improving patients’ lives.
Marco envisions a future where doctors have stronger, long-lasting therapies and the tools to choose the right treatment for each patient. With continued support from organisations like FightMND, research like Marco’s brings us one step closer to turning hope into reality.
Funding breakthroughs to beat the Beast
In 2025, FightMND is investing $22.9 million into cutting-edge research and care initiatives, proudly supporting researchers like Associate Professor Marco Peviani, who is pioneering bold new approaches to treat MND. Marco’s work turning stem cells into protective nerve cells is just one example of the innovative projects funded this year to slow disease, improve care, and bring hope to people living with MND.
Your support makes this possible. Every Beanie purchased, Challenge 27 completed, DIY event hosted, or contribution made to Daniher’s Drive helps fund projects like Marco’s. Research that could one day transform treatment and change lives.
Learn more about the research your support is powering in our 2025 Cure and Care Investment Booklet, and see how together, we’re bringing the world closer to a future free from MND.
Transforming MND Care: Dr Karen Hutchinson’s mission to improve MND Care
Imagine facing a terminal illness and trying to navigate a maze of doctors, hospitals and services. Sometimes not knowing where to turn next. This is the reality for many Australians living with motor neurone disease (MND). But Dr Karen Hutchinson and her team at UNSW are working to make sure no one faces it alone.
Care Coordination and why It matters
Karen’s project, Optimising the impact of the MND care coordinator in the Australian context, investigates how care coordinators help people with MND and their families access the support they need. Evidence shows these professionals can bridge gaps in services, guide people through complex healthcare systems and provide a consistent point of contact. Yet access to care coordinators is uneven across Australia, and little is known about how the role works in different regions.
“This project investigates the role of care coordinators in supporting equitable, person- and family-centred care for people with MND across Australia,” she explains. “By mapping the current care landscape, improving understanding of the current role and responsibilities of MND care coordinators, and exploring experiences of people with MND, this project aims to highlight the value of care coordination and inform more consistent, equitable policy and service design.”
What the Project Will Achieve
For someone living with MND, a single phone call, appointment, or referral can feel overwhelming. Karen’s project aims to change that by turning care coordination into a seamless, reliable support system. Using a co-design approach, the research team, which includes people with lived experiences of MND, works closely with people living with MND and their families to understand what really matters in day-to-day care.
From these conversations, the team will create a comprehensive toolkit that doesn’t just exist on paper. It’s designed for real-life use by care coordinators, healthcare teams and families. The toolkit will include:
A national framework that sets out what care coordination should look like in practice.
An implementation and sustainability plan to ensure coordinators can deliver support consistently across Australia.
An evaluation guide to track quality, highlight successes, and identify areas for improvement.
The ultimate goal is a system where people with MND never feel lost or alone in the healthcare maze. This project will help ensure that, whether someone lives in a city, a small town, or a remote rural area, care is connected, timely and tailored to their needs. By strengthening coordination, reducing stress, and supporting families, Dr. Hutchinson’s work promises to make a tangible difference in the daily lives of Australians living with MND.
What makes this research unique
This is the first national exploration of MND care coordination, taking a system-wide and equity-focused approach. By defining the skills, training, and structure required for effective care coordination, the project creates tools that can be used in real-world settings. “The FightMND care grant empowers the research team to build something actionable, inclusive, and lasting, grounded in equity and lived experience,” says Dr. Hutchinson.
Investing in better care today
FightMND is committed to advancing the search for a cure for MND while supporting research working to improve care experiences for Australians living with MND. Karen’s research is an example of projects working to achieve this. Strengthening coordinated care for people living with MND while helping families navigate complex health systems.
In 2025, FightMND is investing $22.9 million into cutting-edge cure and care initiatives, including care research like Karen’s. This investment ensures that while scientists work towards a cure, Australians living with MND, their families, and carers are supported every step of the way.
Tracking MND progression: How muscle biomarkers could change the fight against MND
Every breakthrough in science starts with a question. For 2025 grant recipient, Professor Peter Crouch from the University of Melbourne, that question is simple, but powerful. How do we know when a treatment for motor neurone disease (MND) is really working?
For people living with MND, time is precious. Every sign of change matters. But the tools researchers currently use to measure whether a treatment is helping can be slow and uncertain. Peter wants to change that.
Left to right: Jeff Liddell (back to camera); Peter Crouch; James Hilton; Youjia Wang; Marc Yong; Ella Smart (back to camera).
Looking to the muscles for answers
With the support of a FightMND IMPACT grant, Peter and his team are taking a new approach. Focusing not on the brain or nerves, but on the muscles that MND gradually weaken.
“Accurate assessment of the response to treatments associated with functional improvement is necessary for advancing the development of new treatments for MND,” Peter explains.
His project is developing special biological markers, or biomarkers, in skeletal muscle that can act like signposts. Showing whether a treatment is improving strength and function.
“Our project aims to develop treatment response biomarkers that are directly associated with functional improvement,” he says.
A roadmap to real-world impact
Findings from the project have the potential to make a huge difference in how quickly researchers can tell if a new drug or treatment is effective. That means faster clinical trials, better results and more hope for people living with MND.
To reach this goal, Peter’s team is following a careful plan:
Mapping how muscle proteins change as MND progresses in lab models.
Identifying which proteins are the best indicators of treatment response.
Testing those findings in real human muscle samples to prove their clinical value.
“It’s groundbreaking work and the implications could be global,” explains Peter. “If validated, we anticipate that muscle biomarkers will be included in future clinical trials assessing candidate treatments for MND.”
Human spinal cord: Image shows a visual representation of the elemental content of human spinal cord, highlighting in blue the central ‘grey matter region’ where motor neurons reside.
Staying connected to the MND community
While this project doesn’t directly involve people living with MND, for Peter, staying connected to the MND community is deeply important. He regularly attends conferences and events bringing scientists, clinicians and people with lived experience together.
“I have over the course of many years working in this field met many people living with MND,” he explains. “Every conversation has the same impact. I want to go back into the lab as quickly as possible to continue progress on our experiments. It’s incredibly inspiring when toiling away in the lab to know that there are so many people out there cheering us on.”
Looking to the future
For Peter, support from FightMND has made this project possible. “This is a new project that has no other funding support. Without support from FightMND this project would not be happening.”
Looking ahead, Peter hopes the discoveries from his lab will help doctors tailor treatments more precisely for each person.
“New tools to determine whether or not a particular drug is working for a person living with MND are needed,” he says. “I hope that our work will add to the toolbox that is currently used.”
Every experiment, every insight, brings the team closer to a future where people with MND can receive faster, more effective treatments and where every sign of progress can be measured with confidence and hope.
Investing in research to beat the Beast
The road to a cure for MND is long, but research like Professor Peter Crouch’s work on muscle biomarkers is bringing us closer every day. By developing new tools to track treatment response, his team is helping potential therapies be assessed faster and more accurately. Giving hope to people living with MND and their families.
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