Meet Katrina: Reluctant runner, passionate storyteller, Challenge 27 Mentor 

As a renowned journalist, Katrina Blowers is used to sharing other people’s stories. But this story comes straight from the heart. This September, Katrina is taking on Challenge 27 in honour of her mum Elizabeth, who passed away from MND in 2024. A passionate nurse and loving mother, Elizabeth taught Katrina to be a fighter, not a bystander. 

As this year’s 27-kilometre Challenge Mentor, Katrina is running 1km a day for 27 days. Then she is finishing strong with one big 27-kilometre run. It’s well outside her comfort zone. But that’s the point. She’s here to show that courage isn’t about perfection. It’s about showing up with heart. 

We caught up with Katrina to hear more about her challenge, her mum and what this community means to her. 

What inspired you to take part in Challenge 27?  

Losing my mum Elizabeth to MND was the hardest thing our family has ever faced. She was a nurse who dedicated her life to helping others and watching MND take that away from her, and from us, left me feeling helpless.   

Challenge 27 gives me a way to channel that grief into action. I can’t bring my mum back, but I can help ensure other families don’t have to go through what we did.  

Has your connection to MND shaped your journey in any way?  

Absolutely. Before losing mum, I took so much for granted. Simple conversations, shared meals, even just hearing her voice. MND strips all of that away so quickly.  

It’s taught me that time is precious and that we can’t wait for someone else to fight the battles that matter. Mum raised me to be a fighter, not a bystander.  

What drew you to take on 27 minutes as your challenge?  

I’m actually doing it two ways: running 1km every day for 27 days, plus a big 27 km run at the end. Honestly, I’ve never been a runner, so both parts terrify me. Which is exactly why they feel right.   

Mum faced something infinitely harder with MND, and she never gave up. If she could fight that battle with such grace and strength, I can push myself beyond my comfort zone for her memory and for the cause.  

What’s one word that sums up how you feel being part of the Challenge 27 community?  

Hopeful. For the first time since losing mum, I feel genuinely hopeful that we can change the outcome for other families. When hope becomes collective, it becomes unstoppable.   

What do you hope others take away from following your Challenge 27 journey?  

That you can tackle 27km your way: whether that’s running like me, walking with friends, or breaking it into smaller chunks over time. You don’t have to be an athlete or have special skills – you just need to care enough to try.  

What kind of difference do you hope to make for those impacted by MND? Big, small, personal or collective?  

Do it your way!  Walk it, run it, break it up over 27 days like I’m doing.  Whatever works for you. You don’t have to have a personal connection to MND to make a difference; you just need to believe that no family should have to lose someone they love from an incurable disease. I’ll be cheering you on every step of the way.  

What would you say to someone who’s thinking about joining Challenge 27?  

Do it! The benefits are huge. You’ll feel amazing for moving, you’ll connect with an incredible community and you’ll be making a real difference for people living with the beast that is MND. Every step, squat or lift counts. Together, we can move mountains!  

Chris Ross MND Research Grant funds groundbreaking nutrition toolkit for families 

When someone is diagnosed with motor neurone disease (MND), everything changes. One of the most devastating symptoms for many is difficulty, eating, drinking and swallowing. These basic, everyday functions, that many of us take for granted become major challenges for those living with MND and their families. 

Now, a new project is aiming to change that. 

Led by Dr Alison Yaxley and Elizabeth Kapur at Flinders University and Flinders Medical Centre, MND Ed: The development and evaluation of a toolkit for patients and families to support their nutrition, hydration, and swallowing will deliver a practical, web-based toolkit to help people with MND and their families manage these critical issues across every stage of the disease. 

The inaugural recipient of the Chris Ross MND Research Grant, this project has one clear goal, to empower people with MND and those who care for them with reliable, accessible and tailored information when they need it most. 

“Our key goals are to improve patients’ knowledge, increase their confidence in managing these challenges, and help them make informed decisions regarding their nutrition and swallowing earlier in their journey,” said Alison.   

More than a website. A lifeline.  

The platform will be a central information hub of evidence-based nutrition and swallowing resources which embraces a proactive approach to empower patients to manage their symptoms throughout their MND journey. 

Honouring Chris and continuing his mission 

For the Ross family, this project holds special significance. It is the first recipient of the Chris Ross MND Research Grant. Created in memory of Chris Ross, a passionate MND advocate, the Grant recognises Chris’ contribution to the MND community through his Beat the Beast and Run4Rossy campaigns.  

Chris was diagnosed with bulbar onset MND in 2021 at the age of 31. Wanting to make a difference, he shared his experience to help raise awareness, educate others and build connections in the MND community across Australia and around the world. He also worked to raise funds to support vital MND research.  

The Ross family lost Chris to MND in August 2023. For his friends and family, the journey to beat the Beast isn’t over. Chris left them with an important legacy. 

Why this project? 

Taking an active part in selecting the recipient of the Chris Ross MND Research Grant, the Ross family were immediately struck by how closely the project aligned with Chris’s experience. 

“This project stood out to us as it was particularly relevant to Chris very early on in his MND journey,” Karen said. “Being diagnosed with bulbar onset MND, Chris’s speech and swallowing were his first symptoms, and further to that, his nutrition became critically important.” 

As a physiotherapist and active sportsperson, Chris always followed a nutrient-rich diet. He wanted to maintain that as much as possible during his illness. But as his condition progressed, the family had to research and adapt everything on their own. 

“We had to navigate this ourselves to achieve the best possible diet for Chris, then adapt it as his condition progressed,” Karen said. “Having a tool available to guide others on this journey would undoubtedly make Chris very proud.” 

“His aim with Beat the Beast and Run4Rossy was to help others, even if it was just one person at a time. Chris would love this project and the positive impact it will have on those living with MND and their families.” 

A tool that offers real choices 

Importantly, MND Ed is designed not as a prescriptive plan, but as a flexible resource tailored to each person’s journey. This means offering a range of diet and nutrition options that respect personal preferences and clinical needs. 

“Our hope is for Liz and Alison to develop not only an online tool to guide and assist people with their nutrition, but also to support and educate about the various options available,” said Karen. “We want to reassure those affected that it is not a one-size-fits-all approach to their diet and nutrition. They still have choices.” 

Karen believes that having these tools in place will make a world of difference to families like hers. 

“When someone is diagnosed with MND, it is life-shattering and overwhelming. There is so much to take on and try to absorb. If this new tool can offer some assistance and provide a range of options, then it’s one less challenge for them to navigate whilst trying to live with this awful condition.” 

Powered by people. Made possible by support. 

And for the Ross family, it’s a deeply meaningful extension of Chris’s legacy. 

“Care grants such as these are essential to help support patients and their families, as there is very poor funding of services to support nutrition in MND,” said Karen. “Without this funding from FightMND we would be unable to develop these essential nutrition and swallowing tools.” 

Continue Chris’ legacy at Run4Rossy Vol.5 

Meet Leanne: Challenge 27 Mentor, motivator, and movement ally 

For more than 30 years, Leanne Sklavenitis has dedicated her life to helping people feel strong and alive through movement. While being diagnosed with motor neurone disease (MND) in 2017 may have changed her journey, it did not take away her passion. Leanne’s unstoppable spirit proves that movement is about embracing every opportunity to keep pushing forward. 

For Challenge 27, Leanne is bringing her inspiration, grit and contagious energy as the 27 Movements Challenge Mentor. She is here to show that no matter what, you can move. Whether you’re stepping, stretching, squatting or simply finding your own way to keep going. Leanne is here to show you that any movement leads to thriving, connection and a life lived fully.  

We caught up with Leanne to learn more about her journey, why she is taking on Challenge 27 and how she is going to help her team move mountains, one movement at a time.  

What inspired you to take part in Challenge 27?  

Movement has been my passion for as long as I can remember. Working in the fitness industry for more than 30 years now, I’ve experienced firsthand the incredible physical and mental benefits it brings, and it’s a lifestyle I truly love. Even living with MND, I want to show that movement is always possible, no matter the odds. You can still move, still thrive, and still show up for yourself every day.  

Has your connection to MND shaped your journey in any way?  

MND has changed every part of my life, but it has also given me a new purpose. Through my journey with MND, I have a deeper drive to inspire others and to help people become the best version of themselves, no matter their challenges.  

What drew you to take on 27 minutes as your challenge?  

As a personal trainer, movement is in my DNA. I’ve always loved helping people move their bodies and feel stronger for it. That hasn’t changed. Even though I now use a wheelchair, can’t move my arms, and am non-verbal, movement still matters. Challenge 27 is my way of proving that there’s always a way to keep moving forward.  

What’s one word that sums up how you feel being part of the Challenge 27 community?  

Awesome!

What do you hope others take away from following your Challenge 27 journey?  

I hope people feel more confident and empowered to move, in whatever way they can. I want them to feel part of a community that lifts each other up. And I want them to realise that movement, no matter how small, leads to better wellbeing and a more awesome life.  

What kind of difference do you hope to make for those impacted by MND? Big, small, personal or collective?  

I’ve lived with MND for more than eight years. Something I try not to take for granted, especially when most are given just 27 months. I want to show others what’s possible. That even in the face of MND, we can still thrive, still laugh, still connect and continue to live each day fully.  

What would you say to someone who’s thinking about joining Challenge 27?  

Do it! The benefits are huge. You’ll feel amazing for moving, you’ll connect with an incredible community and you’ll be making a real difference for people living with the beast that is MND. Every step, squat or lift counts. Together, we can move mountains!  

2025 MND Community Survey: What Australia’s MND community told us 

In August 2025, FightMND and MND Australia released the findings from the 2025 MND Community Survey. A national initiative designed to capture the lived experiences and priorities of Australians affected by motor neurone disease (MND).  

Delivered by ACIL Allen, the survey was developed through a collaborative process involving people living with MND, current and former carers, asymptomatic gene carriers, clinicians and the state MND associations. This inclusive approach ensured the survey addressed the most relevant and pressing issues facing the community today.  

With close to 500 responses collected nationwide, the survey provides a robust snapshot of the challenges, needs and aspirations of those impacted by MND. Findings from the survey will inform future care, research and advocacy efforts across Australia.  

Living with MND: the power of support 

Many respondents living with MND said their quality of life was moderate to good, especially if they received strong support from family and friends and had access to specialist care. Motor neurone disease clinics were highlighted as essential for providing multidisciplinary support. However, people in regional areas and those newly diagnosed often faced delays and barriers in accessing appropriate services. 

Carers: The Backbone of Support 

Carers reported the lowest overall quality of life among all groups. Many are providing full-time care with limited financial support and minimal access to respite services. Half lacked the necessary equipment or home modifications to support their loved ones effectively. Carers in regional areas faced additional challenges, including fewer knowledgeable professionals and reduced confidence in managing future care needs. 

Gene Carriers: Seeking Connection and Clarity 

Gene carriers expressed a sense of isolation and difficulty accessing timely genetic counselling. Cost and referral barriers were common and many reported stigma from healthcare providers. Improved peer support networks, regular neurologist screening and better access to clinical trials were identified as key needs. 

Research and Advocacy: Community-Driven Priorities 

The survey revealed strong interest in participating in research, particularly among gene carriers. However, barriers such as physical limitations, travel requirements and strict eligibility criteria often prevented involvement. Respondents called for more inclusive trials and better communication about research outcomes. 

Top research priorities included: 

• Identifying the cause of MND (75%) 
• Developing clinical trials to slow disease progression (74%) 
• Improving quality of life and earlier diagnosis 

Advocacy priorities focused on equitable access to disability funding regardless of age, increased support for MND Clinics and reducing healthcare costs and wait times. Especially in regional areas. 

Next steps 

FightMND and MND Australia will use the findings from the survey to guide their future work. It is important to note the differences between the work of FightMND and MND Australia. For FightMND, the findings from the survey will be used to look at how our research investments and strategies can help address some of the areas identified by respondents. For MND Australia, findings from the survey will be used to inform care initiatives and advocacy strategies to support Australians affected by MND. 

FightMND and MND Australia will work together to conduct this survey regularly to ensure our work addresses the needs of Australia’s MND community. 

Download the report and learn more about the findings from the community survey today.  

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.

Angie’s story, Xiaoyi’s mission: Honouring the past, powering the future of MND research 

Angie Cunningham faced motor neurone disease (MND with remarkable strength. A world‑class tennis player, Vice President of Player Relations at the WTA, and devoted mother, Angie refused to let her diagnosis define her. Even as the disease progressed, she remained a powerful advocate. Using her voice to drive awareness, inspire hope and spark change. 

“Angie had wonderful perspective,” recalls her husband and FightMND Co‑founder Pat Cunningham. “I remember her coming home from another work trip and commenting how she felt like she was missing out on special parenting moments. She decided to take a career break and focus her time with our two young daughters. Her perspective was, work will always be there, but those special moments with her babies would not be. We didn’t appreciate at the time just how important that perspective was.” 

The Angie Cunningham Biomedical PhD Scholarship and Grant-in-Aid was created to honour Angie’s legacy. It reflects her deep belief in mentorship, curiosity and the power of research to create change. Awarded annually by FightMND, the scholarship supports early-career researchers pursuing bold, high-impact projects aimed at understanding, treating and ultimately curing MND. 

A New Generation of Hope: Introducing Xiaoyi Liu 

Turning Data into Action 

A Unique Perspective, Inspired by Angie 

Angie Cunningham’s story continues to guide the values and vision behind the scholarship. Known for her resilience, compassion and clarity, Angie approached life and her illness with a commitment to what mattered most. 

For Xiaoyi, Angie’s legacy is a powerful source of motivation. “I deeply relate to Angie’s courage, selflessness and unwavering hope,” she says. “Research, like MND itself, can be unpredictable and full of setbacks, but her story reminds me why perseverance and community matter so much. It inspires me to show up each day with compassion and purpose.” 

Pat hopes that every recipient of the scholarship will take time to learn more about who Angie was. Not just the diagnosis she faced, but the life she lived. “We hope those supported by this program read the interview with Hamish McLachlan that appeared in the Herald Sun,” he says. “It provides an insight into, who she was, her wonderful perspective on life, her approach to the Fight against MND, and we hope they find motivation in her positivity and tenacity.” 

What the Scholarship Makes Possible 

Xiaoyi says the support from FightMND has transformed what’s possible in her research. “The FightMND Angie Cunningham PhD Scholarship gives me the freedom and security to fully dedicate myself to a multi-year, high-impact research project with real-world relevance,” she says. “It connects me with national resources like the SALSA Consortium and global biobank datasets I wouldn’t otherwise have access to.” 

“More than that,” she adds, “it gives me confidence to be bold, to collaborate widely, and to build the skills I need for a career devoted to finding better answers for people living with MND.” 

Pat says seeing the impact of the scholarship brings deep emotion to their family. “The emotion is best described as a blend of pride and optimism,” he says. “Pride in the impact the organisation is now having, including encouraging the next generation to join the fight. And optimism, knowing that there will be a day when we together defeat the Beast.” 

The Bigger Picture: Why This Work Matters 

Xiaoyi’s ultimate hope is that her research leads to delaying or even preventing the onset of MND symptoms. Giving families more good years together. She’s also focused on making discoveries that could fast-track affordable, safe treatment options already in existence, through drug repurposing. “This research quite literally saves time. Time with loved ones, time before symptoms steal speech, movement and independence,” she says. “Every dollar raised, every bit of support for FightMND, helps move discoveries out of the lab and into real life.” 

For Pat, that’s exactly what Angie wanted. Real action, real impact, and real change. “On behalf of the family, we continue to be extremely grateful to the team at FightMND, and to the wonderfully talented recipients of the Scholarship and Grant-in-Aid, for allowing Angie’s legacy to continue to fight against the Beast in this way.” 

Advancing Breakthroughs, Empowering Futures 

Since 2014, FightMND has committed more than $117 million to pioneering research and comprehensive care programs that improve the lives of people affected by motor neurone disease across Australia. 

Our focus is not only on groundbreaking discoveries but also on nurturing the next generation of researchers and clinicians. By investing in early-career talent, we’re building a strong foundation for continued innovation and hope in the fight against MND. 

Thanks to these efforts, Australia stands at the forefront of global MND research. Driven by visionary scientists, cutting-edge ideas, and a passionate community united by a shared goal. 

Curious about the latest advancements and the projects your support enables? Head to Our Impact page and see how together we’re transforming lives. 

Strength, determination and a drive to fight MND: Kim’s story 

When Kim Jansen was diagnosed with motor neurone disease (MND) at 46 years of age, her world shifted. But rather than let the diagnosis define her, Kim found strength in her community, her family and her determination to make a difference. 

Kim lives in a close-knit town an hour south of Adelaide with her husband Dave and their two teenagers, Eve and Leroy. A former midwife, Kim has always been dedicated to helping others. Even now, she remains a vital part of her community through volunteer work at the local surf club, Parkrun and netball club. 

Kim’s journey with MND began following a slight moment in her regular yoga class. Noticing something wasn’t quite right when she couldn’t balance on one leg. Something she had always done with ease. That moment set her on an emotional journey that led to her MND diagnosis in August 2024. Rather than taking it easy Kim, and her wonderfully supportive family, turned her diagnosis into a motivator. Embracing family road trips, overseas adventures and treasuring every moment they had together. 

One of these moments was the family’s involvement in Daniher’s Drive in 2024. Through the Drive, Kim saw first-hand the power of the community coming together in the fight against MND. The energy, generosity and shared purposed of everyone involved left a mark on her and her family.  

“Daniher’s Drive isn’t just about raising funds,” Kim explains. “It was about hope, connection, and feeling part of a movement bigger than myself. It reminded me that even in the face of MND, there’s so much we can do together.” 

Kim holds onto the hope that research will one day find a cure for MND. “I ultimately hope for research to find a cure to MND. Until that happens, I hope research can help people living with MND to live comfortably and with the care they need,” she shares. 

That spirit fuels her ongoing efforts. This year, Kim is planning a Big Freeze fundraiser at her local footy and netball club on 31 May 2025. Her family will also be joining Daniher’s Drive in 2025. She’s continually inspired by the kindness and willingness of those around her to rally together for MND, proving that community spirit knows no bounds. 

Kim’s story is one of resilience, hope and the drive to create a brighter future for those living with MND. Through events like Daniher’s Drive and her own fundraising initiatives, she’s showing that every effort and every story brings us one step closer to a cure. 

Registrations are now open for Daniher’s Drive 2025 

Pedals, passion and a push for a cure: Doddie’5 riders hit the road Down Under 

Motor neurone disease knows no borders. Neither do the people working around the world to defeat it.  

This week, that global spirit rolled straight into FightMND HQ, as the lycra-clad legends behind the Dodd1e’5 Gr4nd S7am Tour dropped by for a visit. Just days before hitting the road, the cyclists swapped cleats for conversation, joining the FightMND team for a lively visit that was part panel, part pit stop and a great chance to connect before the challenge ahead. 

Hosted by FightMND CEO Matt Tilley, the panel brought together some serious cycling and rugby firepower. On the mic were tour co-captains, former Scottish Rugby Union President, Ian Barr and Doddie Aid Welsh Captain, Rob Boyns, Doddie Aid Welsh Captain. They were joined by Nicola Roseman, CEO of the UK-based My Name’5 Doddie Foundation, who shared insights into the global impact of their work. 

The visit was more than a pit stop. It was a powerful reminder of what happens when international teams come together, fuelled by a common goal. 

SCOPE MND: Laura Donnelly’s efforts to enhance care for people living with MND

People living with motor neurone disease (MND) often face symptoms like coughing and excess saliva. These can increase the risk of respiratory infections and hospital visits, affecting their quality of life. Managing these symptoms is tough, and about half of patients find treatment does not fully address their concerns. Laura Donnelly, a physiotherapist and PhD candidate at Griffith University, aims to improve care in this area with her project, SCOPE MND, which stands for Secretion and Cough Optimisation for People with MND. 

Laura is the first recipient of a FightMND Clinical Care PhD Scholarship and Grant-in-Aid. This support allows her to focus on this vital research while staying connected to clinical practice. It also helps her work closely with people living with MND, including those in rural and remote areas. 

Her project seeks to enhance care for individuals with MND who deal with cough and secretion symptoms. “Through better symptom management,” Laura explains, “people living with MND and their caregivers can find greater comfort, experience fewer respiratory issues, and make fewer emergency hospital visits, leading to an improved quality of life.” 

As a clinician, Laura has seen how troubling these symptoms can be. “Working with people with MND, I’ve seen the daily impact of cough and secretion symptoms,” she shares. “Collaborating with Speech Pathology colleagues has shown me the value of a holistic approach. I want to apply this method on a larger scale.” 

Existing research tends to address care for cough and secretion problems separately. However, Laura will focus on how health professionals can work together to deliver integrated cough and secretion care, especially for people in non-metropolitan areas. 

Laura’s research uses Participatory Action Research, which centres on people with lived experience. “People with MND and their caregivers will be involved in planning each research phase, interpreting findings, and guiding the next steps,” she explains. “This approach ensures the research addresses real needs and leads to practical changes.” 

As an early-career clinician-researcher, Laura values the support she receives. “We’re on the front line of patient care as clinicians, so we see the issues that need attention. Early-career researchers also bring new ideas that could change lives.” 

Support from FightMND helps Laura take the next step. “It gives me dedicated time to sharpen my research skills and work with an expert team. It also allows me to conduct in-person interviews with people in rural areas or with functional limitations, ensuring the research is inclusive and representative.” 

What excites Laura most is the growing emphasis on care research. “Until there is a cure, we must provide the best care possible,” she says. “I’ve already collaborated with supportive multidisciplinary researchers across Australia and internationally.” 

Through this work, Laura hopes to co-design a care model that improves symptom control, reduces health issues, and leads to a better quality of life. “Supporting FightMND is a way everyday Australians can make a difference—and I’m proud to be part of that.” 

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

At FightMND, we know people living with MND need better support now. That’s why we invest in research that not only seeks to cure MND but 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, like Laura.  

Learn more about the projects and researchers receiving funding on our website.  

Meet Jack Riewoldt: ex-Richmond Tigers goal kicker, founder, storyteller and dad to 3 little chaos machines 

When Jack Riewoldt says, “You’ve got 27 minutes a day in you,” you know he’s not mucking around.  

After a celebrated AFL career, Jack’s hung up the boots and swapped premiership trophies for a new kind of purpose. Whether he’s working with teams and organisations on leadership and culture, breaking down plays on Fox Footy, sharing his story on stage, or just trying to keep up with his three kids, Jack’s mission is simple: to help others find where they belong. 

And this September, Jack’s turning that mission toward something deeply personal: the fight against motor neurone disease (MND). As a Challenge 27 Mentor, he’s giving 27 minutes of his day for 27 days to raise awareness of the 27-month average life expectancy for someone diagnosed with MND. He’s inviting Aussies everywhere to do the same, with one simple ask. Show up, move with meaning and make it count.  

The FightMND team sat down with Jack to chat kids, chaos, purpose and why Challenge 27 is more than just breaking a sweat. It’s about showing up for something bigger than yourself.  

What inspired you to take part in Challenge 27?  

I’ve seen firsthand the impact MND has and 27 months, the average life expectancy after diagnosis, really hit me. If giving 27 minutes of my day can help extend someone else’s, that’s a no-brainer. What a privilege.  

Has your connection to MND shaped your journey in any way?  

It’s made me realise what true strength really looks like. The resilience of people living with MND is humbling, and it puts everything into perspective. As someone who’s built a life around movement, I’ll never take that for granted again. This challenge is about honouring those who no longer have that choice.  

What drew you to take on 27 minutes as your challenge?  

I’m a dad of three, juggling work and life like everyone else. So, I get how hard it is to carve out time. But 27 minutes? That’s doable. It’s a small window to reset, move, and do something that matters.  

What’s one word that sums up how you feel being part of the Challenge 27 community?  

Belonging. There’s something powerful about thousands of people choosing to move, reflect or push themselves each day for a cause that really matters.   

What do you hope others take away from following your Challenge 27 journey?  

That it’s a privilege to be able to move. A simple mindset shift from ‘I have to’ to ‘I get to’ can change everything. Even in the busiest life, 27 minutes a day becomes something bigger than just exercise. It becomes a reminder of what you’re capable of and who you’re doing it for.  

What kind of difference do you hope to make for those impacted by MND? Big, small, personal or collective?  

I hope to raise awareness, spark a few conversations, and get more people involved. Whether it’s one donation, one shared story or one person feeling supported…that’s a win. Every little bit counts in this fight.  

What would you say to someone who’s thinking about joining Challenge 27?  

LFG! Stop thinking and start moving. You’ve got 27 minutes in you. 

Driving with Geoff. Mate’s Crew hits the road for Daniher’s Drive 

This year marks Brook and Lorraine Smalley’s inaugural Daniher’s Drive. For them, this journey isn’t just about fundraising or raising awareness about motor neurone disease (MND). They are fulfilling a promise and honouring a man whose quiet courage still fuels their every mile.  

Geoff Smalley, known lovingly to his family as “Mate”, was diagnosed with motor neurone disease (MND).  in October 2020. He passed away just 16 months later, but the strength he showed during that time continues to ripple through the lives of those who knew him. 

“His decline was rapid, but his courage through it all continues to inspire us,” says Brooke, Geoff’s daughter. 

For Lorraine, Geoff’s wife of many years, the story began even earlier. One night in July 2019, Geoff began slurring his words over dinner. He brushed it off as a side effect from a dental visit. But as the months rolled on, more subtle changes emerged. Fatigue, withdrawal, a softening voice. Then came the difficulty using a knife and fork. 

“I remember watching him try to eat and thinking to myself, ‘That’s Neale Daniher sitting there.’ That moment has never left me,” Lorraine recalls. 

Despite several GP visits and specialist appointments, Geoff’s MND wasn’t diagnosed until October 2020. After eight months, multiple misdiagnoses and a lot of perseverance.  

A week after receiving his diagnosis, Geoff was hospitalised. By the time he came home, he had a feeding tube and breathing support. Geoff and Lorraine managed thanks to the love of their daughters and the wonderful support of MND Victoria.  

Geoff passed away at home, as he wished, on 15 February 2022. 

“He never gave up,” said Lorraine. 

Hitting the road in honour of Geoff’s memory 

Geoff and Lorraine had always planned to travel after retirement. Road trips, new towns, the simple joy of being on the move. But COVID put those plans on hold. And then came MND. 

“The only trip he took in Mum’s new car was the drive home from hospital,” Brooke says. “He never left the house again.” 

This year, Brook and Lorraine are reclaiming the dream to travel. Not just for themselves, but for Geoff.  

“The Drive gives me a way to fulfil a little bit of what Geoff and I dreamed of after retiring,” Lorraine shares. “Just getting in the car and going. I know he’ll be with us every step of the way.” 

Meet Mate’s Crew 

In true Smalley style, their Drive team has a name full of love and family history. Mate’s Crew. 

The nickname “Mate” came from Geoff’s eldest grandson, Jake. One day, as a toddler, Jake was told, “Go find your mate,” and went bounding through the house yelling, “Mate! Mate, where are you?” From that day on, Geoff was never “Dad” or “Poppa”. He was simply, perfectly, “Mate.” 

Mate’s Crew is now rallying their community to raise awareness and funds to fight MND. Brooke set a bold fundraising goal of $10,000, double the usual commitment, and they’re well on their way, fuelled by BBQs, luncheons, a virtual golf day and sheer determination. 

“I didn’t want to go in half-arsed,” she explains with pride. “Mum thought I was mad and she asked when we’d hit our first $1,000. I cockily said, ‘by the end of March’ and we did!” 

“The community support has been amazing. It gives us purpose and a way to give back to the cause that has already given so much to us in support,” said Lorraine.

Be part of Daniher’s Drive in 2025 

There’s still time to join the adventure! Daniher’s Drive 2025 is your chance to hit the road with purpose, just like Mate’s Crew, who are honouring Geoff’s memory by completing the trip he never got to take.  

Whether you’re driving for a loved one, for the cause or for the camaraderie, this four-day journey is not to be missed. Be part of something meaningful this October. Registrations are still open. Sign up today and help drive us closer to a cure for MND.