Somya Jain, Author at FightMND

FightMND to invest $22.9 million in MND research and care in 2025

In 2025, FightMND is proud to announce it is investing $22.9 million into the fight against motor neurone disease (MND). This is the largest investment in the organisation’s history. This landmark funding will support cutting-edge research and vital care initiatives, bringing hope to thousands of Australians affected by the Beast.

Research that drives hope

Of this total, $21.5 million is being directed towards 21 new research projects, one infrastructure initiative and several career development awards to support researchers at all stages of their professional journey. Each one of these investments is designed to accelerate the search for effective treatments and, ultimately, a cure.

This year’s research funding includes:

2 clinical trials to test promising new drugs.
3 drug development projects to advance potential new drugs or therapies through final testing stages before clinical trials.
6 discovery projects exploring key unknowns in MND, including its causes and progression.
9 IMPACT projects tackling the challenges of MND drug development and progress to clinical trials.
1 infrastructure project giving researchers access to cutting-edge tools to study disease-related proteins, paving the way for earlier diagnosis and effective treatments.
7 career development awards, including fellowships and scholarships for early and mid-career researchers.

Improving Care, amplifying voices

FightMND is also continuing its commitment to care. Earlier in the year, we announced $1.4 million investment into four care research projects, FightMND’s first Clinical Care PhD Scholarship and Grant-in-Aid and ongoing support for MND Australia’s Lived Experience Network.

These initiatives aim to improve quality of life, elevate the voices of those affected by MND and ensure care is informed by real-world experience.

You can learn more about the projects receiving funding this year in our 2025 Cure and Care Investment booklet.

Real impact, real stories

Thanks to the incredible generosity of our supporters, partners, and donors, FightMND has already made a significant impact:

Access for over 700 Australians to participate in clinical trials supported by FightMND.
17 clinical trials have been funded across the country.
37 drug development grants have helped move treatments through the research pipeline.
6 drugs have progressed from the lab into clinical trials.
More than 148 people affected by MND have had their voices heard through over 60 engagement activities in research, advocacy, and education.

Every breakthrough, every discovery, and every story of hope is powered by the FightMND community.

Together, we make it possible

This work would not be possible without the generosity of our supporters, including the Federal and Victorian Governments, and major partners Coles, Bunnings, the AFL, Seven Network, Herald Sun, and Chemist Warehouse.

But the biggest thank you goes to you. The FightMND Army. These achievements are only possible because of you. Whether you’ve bought a Beanie, hosted a DIY Big Freeze event, joined Daniher’s Drive, taken on the Challenge 27, or supported us in other ways, thank you.

Every action, every donation and every show of support helps us invest in research that pushes the boundaries of what’s possible in MND research and care.

Stay tuned in the coming weeks as we share the exciting projects receiving funding in the 2025 grant round.

Together, we are making a difference. Together, we are fighting MND.

Daniher’s Drive 2025 crosses the finish line in Torquay

After four unforgettable days on the road, Daniher’s Drive 2025 came to a spectacular close on Victoria’s Surf Coast. Capped off by a night that captures everything that fuels the Drive community.

The Legends of the Land Down Under celebration at RACV Torquay was the ultimate finale. Drive participants swapped their driving gear for costumes, transforming the room into a parade of Aussie icons, from sporting greats and movie stars to outback legends and larrikins. Laughter filled the air, stories from the road were swapped as teams reflected the shared purpose that brings this community together. To beat the Beast that is motor neurone disease (MND).

Among the guests was Neale Daniher himself, whose presence was met with hearty applause and deep admiration from all in the room. His trademark smile and quiet strength reminded everyone why they drive. To honour his legacy, the legacy of everyone affected by MND and continue the fight.

The night reached its emotional peak when the Baker Boys struck the opening chords of the Killer’s classic Mr Brightside. Neale’s favourite song. A chorus of hundreds sang together with arms raised, faces alight. It was a celebration of resilience, joy and unity that embodied everything Daniher’s Drive stands for.

The next morning, the Drive community gathered one last time for breakfast at RACV Torquay, the ocean providing a calm backdrop for reflection and farewells. There were hugs, handshakes and promises to return next year, along with a shared pride in what had been achieved together.

A highlight of closing formalities was the awarding of the Spirit of the Drive Award. This award goes to the team who embodies everything that Daniher’s Drive stands for. Spreading awareness and, most importantly, putting the fun back in to FUNdraising. And this year we had dual winners! Congratulations to Old Crackers and Goolwa RSL Girls for taking the honours for 2025.

And the journey continues in 2026. To mark its 10th anniversary Daniher’s Drive will head across the border to South Australia. Registrations for 2026 are now open. For more information and to register your interest, visit our Daniher’s Drive page.

FightMND would like to thank every participant, community member, sponsor and supporter who made Daniher’s Drive 2025 such an unforgettable success. Your generosity keeps the wheels turning and the hope alive for thousands of Australians affected by MND.

We’ll see you on the road in 2026.

There is still time to support Daniher’s Drive 2025

Thanks to our generous sponsors at Jayco, you could win your very own 2025 Jayco Discovery Outback 19.61-3 Caravan valued at $85,990. Designed to elevate your travel experience, the Discovery Caravan combines contemporary design with thoughtful functionality. Featuring a spacious interior, premium finishes, and the latest in Jayco technology, this special-edition caravan offers everything you need for effortless getaways. Your next adventure begins with the Discovery!

Tickets are just $40 each or 3 for $100. The raffle is open to residents of VIC, NSW, QLD, SA, TAS and the ACT. Entries close Sunday, 26 October 2025 at 11:59 PM (AEST), with the draw held Monday, 27 October 2025 at 12:00 PM (AEDT).

What are you waiting for? Purchase your tickets today and join the fight. Together we can beat the Beast.

Daniher’s Drive heads to the city of churches in 2026

FightMND has announced that the 10th Daniher’s Drive will take place in South Australia in 2026, marking a major milestone in the event’s proud history.

The news was revealed during last nights Daniher’s Drive Trivia Gala and Auction evening, where participants came together for a night of laughter, competition and generosity. The announcement was met with huge excitement as the crowd learned that while the drive has ventured slightly into NSW and SA over the years, next year’s convoy will be based exclusively interstate for the first time.

The Adelaide initiative is a part of celebrating a decade of driving to defeat MND.

Taking place from 8–11 October 2026, the milestone Drive will include time in Adelaide and a scenic journey through some of the state’s most stunning regions. It’s set to be an unforgettable celebration. One that promises plenty of new memories both on and off the road.

Day 3 of the 2025 Drive: From track to Torquay

As excitement builds for next year, the 2025 Drive continued to deliver unforgettable moments on Day 3. The day kicked off with high-speed fun at Phillip Island Go Karts, where drivers and passengers swapped their convoy cars for helmets and a few friendly laps of the track.

From there, participants made their way to Sorrento, boarding the Searoad Ferries for a scenic cruise across Port Phillip Bay to Queenscliff. With clear skies, fresh sea air and plenty of laughter on deck, it was a perfect snapshot of what makes Daniher’s Drive so special. Connection, adventure and shared purpose.

The convoy then rolled into Torquay for the final celebration of the 2025 Drive at RACV Torquay, where the Drive family came together for a fancy dress night themed “Legends of the Land Down Under.” The theme was a fitting tribute to 2025 Australian of the Year, Neale Daniher, whose courage and determination continue to inspire every kilometre of the journey.

Win your next adventure

What are you waiting for? Purchase your tickets today and join the fight. Together we can beat the Beast.

Daniher’s Drive Day 2: From the Yarra Valley to the Coast

The Daniher’s Drive convoy began Day 2 in high spirits, still buzzing from a fun-filled Day 1, which concluded with the Night 1 Dinner, a chance to connect and set the tone for the days ahead. A thank you to the entire team at Peppers Marysville for making the Drive Family feel at home and ready for the road ahead.

Night 1 provided a number memorable moments for the Drive participants. New Drive participants shared their personal experiences with motor neurone disease (MND), offering heartfelt insight into why this journey matters so much. Laughter and friendly rivalry also filled the room during the annual Daniher’s Drive Rock, Paper, Scissors tournament, where our winner, Lou from ACC Higgins, who claimed ultimate honours, securing bragging rights for another year.

With spirits high and camaraderie stronger than ever, the convoy rolled out of Peppers Marysville ready to tackle Day 2.

Bowls, banter and bragging rights in Warburton

The first stop of the day was the Warburton Bowls Club, where the Drive Family kicked things off with a community event like no other. Bowls, but faster! Teams took to the green for a high-energy spin on the classic game.

What started as a light-hearted contest quickly turned into a full-blown battle for glory, with plenty of banter flying across the lanes and laughter echoing through the valley. Congratulations to our winner, Tropical North Victorians, who claimed ultimate bragging rights and a few playful cheers from the sidelines.

Between the competition and camaraderie, there was time to reflect on the deeper purpose behind the fun, raising funds and awareness for people living with MND. It was the kind of morning that captured the true heart of Daniher’s Drive, connection, joy and community spirit, all in the name of a cause that unites everyone on the road.

A heartfelt thank you to the Warburton Bowls Club for hosting the Day 2 community event and for your incredible support of the FightMND mission. Your hospitality, energy and enthusiasm made it a morning to remember.

Lunch with a view at Helen’s Hill Estate

fter farewelling Warburton, the convoy cruised through Yarra Junction and into the heart of wine country, where Helen’s Hill Estate awaited with open arms and breathtaking views. Nestled among rolling vineyards just outside Lilydale, Helen’s Hill is a family-owned winery known for its cool-climate wines, warm service and genuine Yarra Valley hospitality.

Drivers and crew enjoyed a relaxed lunch overlooking the vines. A welcome pause to refuel, share stories and soak in the serenity of the surroundings. The estate’s team pulled out all the stops to ensure the Drive Family felt right at home, creating an atmosphere that perfectly blended good food, great company and even better purpose.

A huge thank you to the Helen’s Hill Estate team for welcoming the Daniher’s Drive convoy and hosting such a memorable lunch. Your generosity and support kept the Drive rolling strong.

Pit Stop with Purpose at San Remo Hotel

By afternoon, the journey turned coastal, and many teams pulled into the San Remo Hotel. A legendary local spot and longtime supporter of FightMND. Every year, the hotel goes all-out for their DIY Big Freeze, complete with a dunk tank, 20 brave local dunkees, and plenty of Big Freeze Beanies sold to raise funds and spirits.

This Friday afternoon, V and Barry, the dynamic duo behind the San Remo Big Freeze, were there to welcome Drive participants and share how their community continues to rally behind the fight against MND.

Trivia, tunes and team spirit at Silverwater Resort

As the sun sets over the coast, the convoy is rolling into Silverwater Resort, ready to trade their driving gloves for trivia sheets. Tonight’s Trivia and Fundraising Gala will bring together Drive teams and members of the San Remo and Phillip Island community for an evening of laughter, friendly rivalry and big-hearted generosity.

Who will take ultimate bragging rights in the battle of the brains? Stay tuned to find out.

Make a Difference (Even If You’re Off the Road)

You don’t have to be behind the wheel to make a difference this Daniher’s Drive.

Our online Silent Auction is live, packed with incredible prizes and once-in-a-lifetime experiences waiting for your bid. Every dollar raised fuels vital MND research and programs supporting Australians living with the disease.

Jump online, place your bid, and may the best bidder win. See who takes the chequered flag when the auction wraps at 10:30 pm AEDT Friday 10 October.

And don’t forget, you can also purchase raffle tickets for your chance to win a 2025 Jayco Discovery Outback caravan. Tickets are $40 each or 3 for $100, with every ticket helping to drive us closer to a cure.

Ready. Set. Drive. Daniher’s Drive launches for 2025

Engines revved, flags waved, and the unmistakable buzz of Daniher’s Drive filled the air as the 2025 convoy hit the road in style.

This year’s journey will take participants from the trees to the seas, with the adventure beginning at the iconic Heidelberg Golf Club. Teams gathered bright and early for a morning filled with fun, laughter, and camaraderie.

Chris and Terry Daniher were on hand, alongside Sunrise’s Sam Mac, to cheer on the teams, wave the starting flags and send the convoy off with energy and good humour. From the very first rev of the engines, the excitement was contagious.

A big thank you to Heidelberg Golf Club for their incredible support and for providing the perfect backdrop to launch Daniher’s Drive 2025.

A homecoming to remember

The first stop of Daniher’s Drive saw the convoy roll into Assumption College, Kilmore, where the school community turned out in force to give a heartfelt welcome. For Neale Daniher, a proud alumnus of the Class of ’78, it was a deeply emotional return to the halls that shaped his early years.

This visit also marked a special milestone. Neale’s first time seeing the Neale Daniher Community and Sports Pavilion, opened in 2022 and named in his honour. The Pavilion stands as a testament to his legacy, featuring a Hall of Excellence, change rooms, visitor facilities, a grandstand, umpire spaces, a multi-purpose communal area, and a function centre that seats 250 people. It also includes warm-up zones, equipment storage and plaques sharing Neale’s inspiring story.

Students, staff, and locals lined the Assumption grounds to pay tribute to Neale’s legacy and the ongoing fight he continues to inspire.

Then the fun kicked into high gear with the inaugural Daniher’s Drive Remote Control Car Race. Current students took on the Class of ’78 and the Drive All Stars in a spirited showdown. Laughter, cheers and a few playful taunts filled the school oval as generations collided in a race for bragging rights.

It was a perfect moment that captured the essence of Daniher’s Drive. Fundraising, fun, and connection all rolled into one.

Congratulations to Daniher’s Drive All Stars for taking out the inaugural race and a heartfelt thank you to the students and staff of Assumption College for hosting our first community event of this year’s Drive.

Food, friendship and the open road

From Kilmore, the convoy cruised through the countryside to the beautiful Flowerdale Estate in Strath Creek, where rolling green hills and spring sunshine set the scene for a well-earned lunch stop. Drivers recharged, swapped stories and soaked up the community spirit that makes the Drive so special.

The scenic Yarra Valley provided the next stage of the journey, with winding roads and breathtaking views making each kilometre feel like part of a grand adventure.

Among the ranges: A night in Marysville

As the sun dips behind the Yarra Ranges, the convoy makes its way to Peppers Marysville, their home for the night. Nestled among towering trees and crisp mountain air, it’s the perfect place to unwind after a big first day on the road. Tonight, participants will share stories, enjoy a meal, and recharge for another day of adventure.

Join the Drive beyond the road. Enter the Daniher’s Drive Raffle today.

You don’t need to be behind this wheel to make a difference this Daniher’s Drive. Join the fight against the Beast that is MND with the 2025 Daniher’s Drive raffle.

What are you waiting for? Purchase your tickets today for just $40 each or 3 for $100 and get in the draw!

The raffle is open to residents of Victoria, New South Wales, Queensland, South Australia, Tasmania and the Australian Capital Territory. Entries close Sunday, 26 October 2025 at 11:59 PM (AEST). The draw will be held Monday, 27 October 2025 at 12:00 PM (AEDT).

Join the fight. Together we can beat the Beast.

A global effort to change the future of MND

In September 2025, leading researchers, clinicians and MND advocates from across the globe came together with one shared goal. To accelerate progress toward a future free from motor neurone disease (MND).

The Global MND Research Roundtable, hosted by FightMND, was more than a workshop. It was collaboration in action. With a bit of competition thrown in.

Building on the foundations of the inaugural 2024 event, this year’s Roundtable reflected the collective wisdom of the international MND research community. Guided by feedback on the Global MND Research Acceleration Strategy and insights from experts worldwide, the agenda focused on the challenges and opportunities that matter most right now.

Over two days, participants tackled five critical priorities:

Biomarker validation: refining the tools to measure disease progression.

Asymptomatic disease: understanding the earliest, hidden stages of MND.

Human models: building better model systems to test potential therapies.

Under-represented regions: understanding the disease in diverse populations, empowering genetic studies through collaboration and strengthening global research equity.

Preclinical to clinical development: bridging the gap from lab to patient.

These are complex problems, but in the room, they felt full of possibility. Conversations sparked new ideas, challenged assumptions and laid the groundwork for real-world impact. It was collaboration at its best. Global, passionate and focused.

We extend our thanks to the priority champions, whose expertise and leadership guided the discussions across each focus area. Their work in facilitating dialogue and encouraging collaboration was vital in translating these conversations into meaningful actions for the MND community.

Thanks must also go to Dr Bec Sheean and Dr Gethin Thomas from FightMND, and Dr David Taylor from ALS Canada, whose leadership and coordination made the Roundtable possible. Their vision and commitment ensured every moment counted. We also thank Amanda Nolan and the team at Atticus Now, whose expert facilitation kept discussions sharp, inclusive and action oriented.

What happens next?

The Roundtable may have wrapped, but the work it inspired is only just beginning.

In the coming weeks, a detailed event report will be shared with participants. This report captures the key insights from this year’s Roundtable and will chart the path ahead.

New working groups are already forming across the five priority areas. These teams will continue the conversations, turning ideas into strategies, and strategies into action. Plans are also underway for virtual follow-up sessions, bringing participants back together to share progress, exchange updates, and keep the collaborative spirit alive.

The Roundtable was a spark. What follows is a sustained, global effort to push boundaries, challenge norms and drive real change in MND research.

Stay tuned to our website for new updates on the progress of the work of the 2025 Roundtable.

A journey for Judy and Jeff: Stawell Gold Diggers join their first Daniher’s Drive

When the Stawell Gold Diggers roll out for their very first Daniher’s Drive, they’ll be carrying more than supplies and luggage. They’ll carry the memories of two loved ones, Judy and Jeff, and a determination to make a difference in the fight against motor neurone disease (MND).

Leading the team is Jodie, driving in honour of her beloved mum, Judy. By her side will be her husband Tony and close friends Karen and Jim. Their bond goes deeper than friendship. Karen also knows the heartbreak of motor neurone disease (MND), having lost her father, Jeff, to the disease in 1985.

For Jodie, the memories of her mum’s diagnosis are still sharp.

“We noticed Mum had developed a slur in her voice in March 2015,” she recalls. “The local GP thought it could have been a stroke, but the tests came back clear. I happened to be seeing a neurologist myself and mentioned Mum’s symptoms. He wanted to see her straight away, so just two days later we travelled three hours to Melbourne. He noticed fasciculations in her arm immediately and organised for her to be admitted to St Vincent’s for a week of testing.”

Jodie stayed with her mum throughout, but just two days in, the neurologist pulled her aside and said, “It’s not going to be good news. In fact, it will be really bad news.”

The next day, Judy sat with the Herald Sun in her hands. Neale Daniher’s story was on the front page. She looked at Jodie and said, “This sounds horribly like me.”

A week later, it was confirmed. Judy was diagnosed with Bulbar Onset MND.

“I remember spending the whole trip home Googling what it was and wondering how I was going to tell my parents and family what I knew about the disease,” Jodie says.

From that moment, everything changed. Living in regional Victoria meant long drives to Melbourne and limited access to MND expertise. Judy’s speech deteriorated rapidly, but her spirit never did.

“She was an extremely strong woman,” Jodie says. “She spoke her mind openly and made sure everyone knew where she stood.”

Judy was also clear about her wishes. After a week in hospital where she saw other MND patients in their final stages, she quietly told Jodie she never wanted to reach that point, even writing down her wishes for end-of-life care.

“We couldn’t find any GPs who would even listen to us about what Mum wanted,” Jodie says. “Two even told us they didn’t want her as a patient if she had an attitude like that.”

When Judy could no longer eat, her decline was swift. In May 2016, just 13 months after her diagnosis, she passed away peacefully in palliative care, surrounded by her family. She was 72.

Since then, Jodie has carried her mum’s legacy forward. Each year she’s rallied her hometown by selling Big Freeze Beanies, raising funds and awareness for FightMND.

This year marks a new chapter for Jodie. She is captaining the Stawell Gold Diggers who are taking part in Daniher’s Drive for the very first time. Their journey will be a tribute to Judy, to Jeff and to all families touched by MND. Every kilometre they cover, every conversation they start, and every community they engage with directly supports MND research and care. Their journey isn’t just a tribute. It’s a meaningful step toward real progress against the disease.

Enter the 2025 Daniher’s Drive Raffle for your chance to win!

If you can’t participate in this year’s Drive, you can still support FightMND in the fight against the Beast with the 2025 Daniher’s Drive raffle.

What are you waiting for? Purchase your tickets today for just $40 each or 3 for $100 and get in the draw!

Join the fight. Together we can beat the Beast.

Get your Raffle Tickets

Opening doors to discovery: FightMND travel grant recipients attend PACTALS 2025

At the beginning of September, six Australians with lived experience of motor neurone disease (MND) gathered in Melbourne for PACTALS 2025 and the 12th MND Australia Care Forum. Their attendance was made possible through FightMND’s Travel Grant program, which removes barriers to ensure lived experience is represented at the forefront of MND research and care.

Breaking down barriers to participation

As part of FightMND’s broader Care Strategy, the Travel Grant was designed to empower people living with MND, genetic carriers and carers to engage directly with the latest research and care innovations. By covering travel-related costs such as flights and accommodation, the grant makes it possible for recipients to attend in person. Ensuring their voices are included in the global conversation.

A seat at the table of global innovation

This year’s PACTALS conference, themed “Towards Precision in ALS/MND Treatments”, brought together leading researchers, clinicians and advocates from around the world to explore cutting-edge developments in treatment and care. The MND Australia Care Forum, titled “From Discovery to Delivery”, focused on turning research into real-world support for people living with MND and their families.

For FightMND Travel Grant recipients, the opportunity went beyond attending presentations. It meant contributing to the future of MND care and research. Participants were chosen not only for their lived experience but also for their passion, advocacy, and commitment to shaping Australia’s MND landscape.

As recipient Anthea Smith explains:

“Travel grants like this remove barriers and make sure the voices of carers and people living with MND are present in spaces that shape research and care. For me, it’s not only about supporting my husband and local community, but also about ensuring lived experience continues to bring heart and humanity to the global MND conversation.”

This sense of purpose was echoed by Aaron Hinttala:

“I’m looking forward to sitting in and learning about cutting edge research in the field of MND/ALS. Also, it’s always good to meet others going through a similar struggle.”

For Joel Forsyth, the grant was recognition of his years of effort:

“As a carrier of a MND gene, the grant means the effort I have put into fundraising and awareness is being recognised. I look forward to meeting others in the same scenario as me.”

Amplifying voices, building community

Beyond the science, the grant also gave recipients a platform to connect, share and strengthen community bonds.

Grant recipient Pagie Higgins reflected:

“As someone from the familial MND community and a genetic carrier living at heightened risk, receiving a FightMND PLEx travel grant has given me the opportunity to learn about the latest research and developments that directly affect us. It enables me to share highlights with others in my community, contribute our voice to key conversations, and support stronger peer connections. It also ensures my own understanding stays current when contributing to national and international projects, including guideline development.”

Fellow participant Michael O’Hehir shared:

“I feel so fortunate that there is such strong support from MND Australia and the local State associations as well as Fight MND to allow me and my wife to attend this important conference. I’m excited to meet with others connected to the MND community so that we can all learn from each other and share with the community of MND warriors and their carers.”

Looking ahead

The FightMND Travel Grant is more than financial support. It’s about breaking down barriers so people with lived experience can take their seat at the table of discovery and innovation. With up to $5,000 for people living with MND and $2,500 for carers and genetic carriers, the grant ensures lived experience is represented where it matters most.

This year, six Travel Grants enabled Australians to attend PACTALS 2025 and the MND Care Forum. Each of them returned home with new knowledge, stronger connections, and fresh perspectives to share with their communities. Their presence helps ensure that the voices of people living with MND are heard alongside researchers and clinicians. Shaping priorities and driving progress together.

FightMND will continue to offer Travel Grants in the future, opening doors for more Australians to connect, contribute, and help build a world where no one faces MND alone.

Stay tuned for updates on the next round of applications. 

Mackenzie’s story: a young mum’s legacy of hope

Mackenzie never imagined that creating her first Will would become an act of hope.
In her mid-twenties, with a young family and her future ahead of her, Mackenzie was focused on making practical decisions to protect the people she loved most. Writing a Will was one of those important steps.

When the online Will platform asked if she’d like to leave a gift to a charity close to her heart, Mackenzie realised she had the chance to create a legacy of care and hope. One that could live on far beyond her own lifetime.

“I wanted to make sure my family would be looked after,” Mackenzie explains. “But more than that, I realised this was a chance to be part of something bigger than just myself.”

For Mackenzie, the choice was clear. She included a gift in her Will to FightMND.

A family tradition of support

Mackenzie grew up in a family of passionate AFL supporters. Each year the Big Freeze was a time for her family to come together to support the fight against the Beast. For Mackenzie, the work of FightMND and the incredible strength of the FightMND Army was an inspiration.

“I’ve grown up watching and supporting the amazing work FightMND do, and I admire the generosity of their community,” she says. “While I don’t have a personal connection to MND, I am especially inspired by Neale’s story and empowered to support such a meaningful cause.”

Today, as a new mum to baby Gracie, Mackenzie is excited to pass on the values of community to her daughter, and provide hope to the next generation for a future free from MND.

The power of perspective

Although Mackenzie is lucky to have no personal experience with MND, she understands the profound impact her future gift could have.

“I am so grateful to have a healthy family and have deep sympathy for those who are living with, or who have lost a loved one to MND,” she reflects. “I hope that by leaving a gift in my Will, one day all families will know MND as a treatable, even curable disease.”

This perspective embodies exactly what makes FightMND’s community so powerful. It’s people like Mackenzie, who choose to fight even when the battle isn’t their own, who are helping to create the breakthroughs we need.

A message to young families

Mackenzie has an important message for other young people. Don’t wait to plan for the future and don’t underestimate the impact you can have.

“So many young people don’t consider creating a Will, but knowing that I will make an impact long into the future is such a great feeling,” she says. “Choosing a few charities that hold a special place in my heart is such a feel-good move, and I’m proud to have set aside a gift for FightMND.”

Her advice is simple, “Everyone should consider a gift in their Will and enjoy the good karma coming their way afterwards!”

Building a legacy of hope

Mackenzie’s decision represents something profound. A young person choosing to invest in a future she may never see. For families she may never meet. Mackenzie joins many of our supporters who have made similar commitments, creating a powerful foundation for FightMND’s ongoing mission.

“It is a special feeling to be a part of something bigger than just myself, and I am grateful to be able to leave a donation to FightMND” she says.

The ripple effect

Mackenzie’s story reminds us that the fight against MND isn’t just about those directly affected by the disease. It’s about an entire community, young and old, who believe in the power of hope.

Every gift in a Will, no matter the size, helps support vital MND research and programs supporting Australians affected by MND. It’s supporters like Mackenzie who help ensure this work continues. Building towards a day when no family faces the devastating impact of MND.

As Mackenzie looks toward the future with her young family, she carries the knowledge that her legacy will extend far beyond her own lifetime. A legacy of hope, community and the unwavering belief that together, we can beat the Beast.

Including a gift in Your Will

Like Mackenzie, you can make a lasting impact for families affected by MND. After providing for your loved ones, you might consider including a gift in your Will to FightMND by consulting your solicitor or creating an online Will. Just as Mackenzie chose to turn her Will into an act of hope for future generations, your gift can help fund pioneering research, support clinical trials, and provide better treatments for people living with MND.Until 30 September, FightMND is offering you the opportunity to secure your family’s future with an online Will through Safewill and Willed. Both Safewill and Willed offer a simple platform with step-by-step instructions. Please note that after 12 months, a subscription fee will apply. Terms and conditions are available on the Safewill and Willed websites.

If you’d like to explore the impact your gift could make, our Gifts in Wills Coordinator, Eloise Shepherd, is available for a confidential discussion at [email protected] or (03) 7052 7004.

Be inspired by Mackenzie’s choice today and leave your own mark on the fight against MND.

Going the distance for a cure: Nikole’s story

For Nikole Neal, running has been a part of life for the better part of 30 years. She’s pounded the pavement in countless races, but until now, fundraising has mostly been reserved for the Mother’s Day Classic.

This year, something changed.

When she signed up for the Sunshine Coast Half Marathon, a name jumped out at her from the registration page. FightMND.

“It was a no-brainer,” Nikole says. “My mother-in-law passed away in March this year from motor neurone disease (MND), two years after being diagnosed. Watching her lose her independence, her joys, her ability to function and her life was heartbreaking. The saddest of all was losing precious time with her three-year-old granddaughter.”

Nikole had been searching for a way to honour her mother-in-law. The race, and the chance to run for FightMND, felt like perfect timing. “She was always one of my biggest supporters and would always watch my tracker when I raced,” Nikole recalls.

More than 2,700 Australians live with MND. Every day, two people will die from the disease — and two more will receive a diagnosis. Through her fundraising, Nikole has seen firsthand how far-reaching MND really is. “It amazes me that for a disease that is considered quite rare, we know a number of people whose family or friends have been affected by it,” she says.

Running for a reason

Nikole set a modest target of $1,000, mindful that people were doing it tough financially and that she had recently fundraised for another cause. But the support was overwhelming. She hit her target a week before race day, upped it to $1,500, and kept going.

Her aim is simple. Raise awareness and help fund the research needed to one day find better treatments, or even a cure. “I don’t think I can, as one person, have an impact on someone living with MND. But if people see me running for it, maybe they’ll know there are people out there trying to make a difference in the tiniest way.”

More than a personal best

For Nikole, running has always been a solo pursuit. Time to think, reflect and sometimes work through frustration or grief. Races are her way of pushing herself and the finish line is always emotional. “If I did a collage of my finish line photos, I am almost always crying. It’s the joy of finishing a race which not everyone gets to experience.”

On Sunday 3 August, Nikole took on the Sunshine Coast Half Marathon with grit and determination. “The privilege of standing at a start line is never lost on me. When you see loved ones robbed of basic functions like being able to scratch when you’re itchy, you realise just how well we have it and what an honour it is to be able to participate in fun runs of any length.”

So, what is Nikole’s advice to others considering fundraising for FightMND at their next major running event?

“Please, please, please do it! It’s not about the time or the PB, it’s about doing it for those who can’t, raising awareness, celebrating life, and supporting those who feel alone. We are capable of far more than we realise and should make the most of it while we can.”

Get moving. Get involved. Get fundraising!

When you fundraise for FightMND, you’re not just raising money. You’re powering life-changing research and support for Aussies living with MND. Whether you’re lacing up for a run, hosting a trivia night or turning your next celebration into a fundraiser, every effort makes a difference in the fight against the Beast.

Are you ready to make a difference? Jump onto our Fundraise for Us page and join the FightMND Army today!