A life lived to the fullest. Matt Nable on his brother, Aaron’s, fight against MND.  

In July 2022, Matt Nable’s youngest brother, Aaron, was diagnosed with bulbar onset motor neurone disease (MND). By the time he received his diagnosis, the disease had already taken a heavy toll. Aaron’s speech had slowed so much that people struggled to understand him. As a result, he began pulling away from social situations. A dramatic shift from the vibrant personality that defined him. 

“I never thought it would be MND,” Matt explains. “I always thought MND started in the hand or the leg.”  

In the 20 months that followed, Aaron’s condition deteriorated rapidly. “It was just a progression of milestones as the disease took more and more from him,” said Matt. “First it was his speech. Then his ability to eat. His ability to walk. And then his ability to move at all. It was incredibly hard to watch” 

A man who lived every moment 

Matt remembers Aaron as a person who quickly made an impression. Charismatic, gregarious and full of life, he had a rare ability to bring people together. He was the heartbeat of every gathering, the one people gravitated toward, the one who made sure there was always laughter in the room. 

But beyond his larger-than-life energy, Aaron was deeply kind. He cared fiercely about others. Always standing beside the underdog. Rooting for the quiet worker in the corner. Compassion wasn’t just something he carried. It was who he was. 

Aaron died from MND in March 2024 at the age of 46. His loss was felt deeply, not only by his family but by the countless people whose lives he had touched. Nearly 2,000 people attended his funeral. A testament to the profound impact he had on those around him. 

“That tells you who he was,” Matt reflects. “He had a real impact on people. He really was a beautiful man.” 

Fighting for a better future for those with MND 

Aaron’s story has lit a fire within Matt. A deep conviction that research into MND needs far more urgency, attention and funding.  

“It’s 2025 and there’s still no cure,” he says. “Not just that there isn’t a cure. There’s no real way to slow it down. People aren’t gaining years, they’re still being told, ‘You’re terminal.’ That’s just not good enough.” 

Matt is hopeful continued pressure, and awareness can help raise the funds researchers need to make breakthroughs. “We need to be talking about therapies that can slow the disease. That can stop it in its tracks. Maybe we won’t find a full cure straight away, but if we can halt the progression, give people time, give families hope, that would change everything.” 

“Until people experience seeing a loved one robbed of their ability to speak, eat, walk, it’s hard to comprehend how devastating MND is. That’s why research is imperative. It’s our only hope for stopping this disease in its tracks,” Matt explains. 

But MND doesn’t just impact the person diagnosed. It deeply affects their family as well. The emotional, physical, and financial toll can be overwhelming, making investment in care just as important as research itself. “Without professional support, the toll on families is enormous,” Matt says. “No one should face this alone. That’s why investing in both care programs and MND research is so important.” 

The power of advocacy 

For Matt, the work of Neale Daniher to advocate for research into treatments and, one day, a cure for MND has inspired countless Australians. Himself among them.  

“Neale’s advocacy has had a significant influence on me,” Matt reflects. “I was already looking to do something in this space. Advocacy, awareness, and supporting the fight against MND. Neale’s work connected me with Bec and others wanting to make a difference. Without the platform Neale has built, I wouldn’t be involved the way I am.” 

Daniher’s FightMND organisation has raised millions of dollars, pushing forward research efforts while fostering national awareness. His determination and courage led to him being named Australian of the Year, an acknowledgment of his profound impact. 

Uniting a nation 

Events like FightMND’s Big Freeze have become significant moments in Australian culture, bringing people together for a common cause. The overwhelming support for these initiatives highlights the country’s dedication to finding a cure for MND. 

“Oh, it’s great,” Nable says of the solidarity shown. “It’s about galvanising a community. Not just those directly impacted by MND, but everyone who understands that we need to take action. The awareness, the publicity, and the money raised all contribute to research that could find a cure or treatments to slow the disease’s progression. FightMND and the Big Freeze have been amazing.” 

The future for MND research 

For Matt, the fight against MND is deeply personal. He has seen firsthand the devastating effects of the disease and the urgent need for continued support and funding. 

“MND is not as rare disease as people think it is,” he states. “I saw two people I knew die of MND within a year. I don’t know two other people who’ve died of the same thing. That really puts it into perspective for me.” 

“A lot more people are gonna be affected by it, either as patients or surrounding family members. With what my family has been through, you wouldn’t wish upon anyone,” Matt reflects.  

With events like the Big Freeze continuing to inspire action and raise crucial funds, Nable remains committed to raising awareness and supporting the battle against MND. His hope is that, through collective effort, we can continue pushing forward to find solutions and provide relief for those affected by this disease. 

“Real efforts to raise awareness and funds to power research are vital,” Matt states. “That action, that grows and moves across the community, that is going to play an important role in getting numbers to move the other way.” 

Live it forward this Big Freeze and join the fight 

This Big Freeze join the FightMND Army and live it forward for those in the fight against MND.  

By supporting FightMND, you’re helping invest in groundbreaking MND research and programs supporting Australians living with MND, their families and carers.  

Wear your support by grabbing a Big Freeze 11 Beanie from Coles, Bunnings, select Shell Reddy Express stores and online at fightmnd.org.au  

There are many ways you can get involved this Big Freeze. Wear your Beanie, pull up your Socks, host a DIY Big Freeze event or find a creative way to join the fight. Every effort makes a difference.  

Don’t forget to share your support. Tag @fightmnd and use #BigFreeze11, #LiveItForward, #TeamUpForBigFreeze11, and #FightMND on social media to spread the message and inspire others to take action. 

Together we can live it forward and strive towards a world free from MND.