Latest news with #FightMND
News.com.au
3 hours ago
- Health
- News.com.au
Big Freeze shines a light on MND – and the Aussie tech helping sufferers take back control
MND strips voice and movement from thousands Big Freeze and Neale Daniher lead the national fight Control Bionics tech gives the silent a voice There's a reason it's called the Beast. Motor Neurone Disease (MND) creeps in quietly and slowly shuts the body down, one function at a time. It's a progressive neurological disease that attacks the motor neurons, the nerve cells that control movement. Over time, it robs people of their ability to move, speak, swallow, and eventually breathe. The average life expectancy after diagnosis is just 27 months. It's brutal with no known cure, but it's also brought out some of the most inspiring acts of human resilience. Big Freeze bringing hope to many If you've watched AFL on the King's (or Queen's) Birthday in the last decade, you've probably seen celebrities sliding into a pool of ice. That's the Big Freeze, FightMND's flagship event founded by former AFL great Neale Daniher, who was diagnosed in 2013 and is still fighting more than a decade later. Daniher, now 2025 Australian of the Year, has helped raise over $100 million for MND research. And the Big Freeze is back again this Monday, June 9, at the Dees vs Pies match, with the MCG expected to turn into a sea of blue to raise funds and awareness. But behind the icy stunts and the footy clash lies a deeper message: we can't give up. The CEO of MND Australia, Clare Sullivan, strongly believes it's important for people with MND to participate in activities of importance to them. 'For example, being able to tell their grandkids they love them, or being able to go out for a coffee with friends,' Sullivan told Stockhead. She shared a story of a Queensland man in hospital who couldn't speak or press a button to call the nurse. 'This person used his AAC (Augmentative and Alternative Communication) device to call his wife at home to communicate with her, requesting she call the hospital and ask them to provide him an extra blanket as he was cold. 'You can see from this how essential it is that people have the ability to communicate their needs.' Control Bionics helps the unheard be heard And this is where technology such as that offered by Aussie medtech firm Control Bionics (ASX:CBL) could play a crucial role. CBL isn't throwing people down ice slides, but what it's building is potentially life-changing. The company's NeuroNode tech uses EMG (electromyography) to detect the faint electrical signals the body sends to muscles, even if those muscles don't visibly move. These signals are then translated into digital commands. Think of it like a wearable mouse click powered by thought. This kind of assistive technology, Sullivan said, helps people with MND to be independent in their communication, which is essential in maintaining quality of life. 'The equipment is highly adaptable and flexible, which is essential because as a person deteriorates, it can be easily modified," she said. 'The devices are compatible with their 'voices' via voicebanking, which then enables people with MND to communicate in their 'own voice' further aiding in quality of life.' Sullivan also said it's important that access to this kind of technology happens early, because becoming familiar with how they work takes time. 'Practice is essential, and unfortunately we see is that people don't access it until far too late," she said. 'This means that often people give up because they are fighting against fatigue, and other symptoms that make it too hard.' CBL goes beyond voice Beyond NeuroNode, Control Bionics has added a new tool to its kit: NeuroStrip. This is a paper-thin wearable that reads both muscle signals (EMG) and movement data. It's built to be extra sensitive and comfortable, making it easier for people to use over long periods. While it helps with communication, NeuroStrip's potential goes further. CBL said it could be used in rehab, managing movement disorders, or even sports science, where tracking small muscle responses matters. Control Bionics is also stepping into mobility. Its new DROVE module, co-developed with Deakin University, brings smart navigation to powered wheelchairs. DROVE picks up muscle signals and translates them into movement, so a simple intention like 'go left' becomes action. For people with limited mobility, it's a big step towards more freedom without needing complex setups or invasive tech. But Control Bionics isn't alone in the fight. Adelaide-based Link Assistive, for instance, provides eye gaze technology designed to keep communication flowing even when movement becomes severely limited. Zyteq, out of Melbourne, offers a suite of voice and switch-based systems, helping people with MND stay connected using highly customised setups. Costly tech, crucial time Control Bionics is an approved NDIS provider, which means eligible Australians can access funding for its tech like NeuroNode and NeuroStrip. It's also worked closely with MND Associations to place devices into state equipment libraries, helping people get access earlier – often at low or no cost. But it's not always smooth sailing. 'This technology is expensive, and often there are a lot of hoops to get NDIS funding for this,' said Sullivan. Applications usually need detailed assessments from speech pathologists and occupational therapists, which can slow things down. And for those over 65, who aren't covered by the NDIS, the cost can sometimes be out of reach. MND Associations, Sullivan said, fundraise to make this tech available to those who need it most. 'The MND Associations are heavily reliant on community donations and generosity to purchase this equipment for hire, and often there are waiting lists as demand outstrips supply.' While technology like NeuroNode helps restore communication and independence, tackling neurodegenerative disease at their root will also require medical breakthroughs. That's where ASX biotechs come in. Neurizon Therapeutics (ASX:NUZ), for instance, is working on a promising drug for ALS. Neurotech (ASX:NTI) is developing cannabinoid-based therapies for brain disorders. And Neuren Pharmaceuticals (ASX:NEU) has already landed FDA approval for Rett syndrome.
The Advertiser
10 hours ago
- Health
- The Advertiser
How Neale Daniher's blue beanie blockbuster is inspiring change, fuelling hope
Motor neurone disease warrior Neale Daniher has a simple but powerful message for young people in 2025: learn how to be resilient. "It's not a matter of if life gets tough, it's when and how often," the 2025 Australian of the Year said. "Character isn't just built in the good times - it's built even more in the tough times. Like a nation, like a football club, like a family, strength is forged through struggle." This long weekend the 64-year-old former Melbourne coach and Essendon player will rally the nation once again around FightMND, the charity he co-founded and which has raised $115 million for research to find a cure for the disease he has battled since 2013. FightMND's 11th annual "Big Freeze at the 'G" fundraiser takes place before the June 9 King's Birthday AFL clash between Collingwood and Melbourne. Big Freeze 11 blue beanies have been on sale at Coles and Bunnings stores in recent weeks and the MCG is expected to be a sea of blue on Monday. Inspired by the words of the philosopher Kierkegaard - "Life can only be understood backwards, but it must be lived forwards" - Daniher said: "This year we're daring everyone to live it forward. To live in the moment. To take bold steps toward a brighter future for those living with MND and in memory of those we've lost." The theme for this year's sliders is "iconic Australians" - a nod to Daniher's Australian of the Year honour. The 10 celebrities taking the toboggan plunge into a pool of ice costumed as Aussie stage, screen and sporting legends include Olympic swimmer Ariarne Titmus, actor Matt Nable (who lost his brother to MND), former Australian cricket captain and 1999 Australian of the Year Mark Taylor, Olympian and Sunrise co-host Matt Shirvington, AFL legends Peter Daicos and Aaron Davey, netballer Liz Watson and Aussie cricket captain Alyssa Healy. "Since the first Big Freeze in 2015, this movement has grown into a force of nature, fuelled by the generosity of Australians across the country," Daniher says. "The generosity and unwavering spirit of the community has inspired change and fuelled hope." A year after his diagnosis, Daniher co-founded FightMND with Dr Ian Davis and Pat Cunningham. Sadly, MND has since claimed the lives of Dr Davis and Mr Cunningham's wife Angie, but the legacy they created with Daniher lives on. "Neale is an inspiration to many millions of Australians," AFL CEO Andrew Dillon, a FightMND board member, said. "His achievements on the footy field were remarkable, while his legacy off the field in helping raise awareness and find a cure for MND is legendary. There is no bigger champion than Neale, as he continues to amaze us with his resilience, passion and drive, all while keeping his cheeky Daniher wit." While MND has robbed the West Wyalong-born, Riverina-raised Daniher of the ability to speak, he uses eye-gaze technology to communicate. When he accepted his Australian of the Year Award in Canberra in January, his speech was read by a robotic voice. But the voice now sounds like the real Neale thanks to AI and recordings of his media conferences from his coaching days. "It's much better than the robot voice I had, but I don't sit around listening to myself all day," Daniher told 7News. He recently took his message in person to school students in Perth - his first official interstate trip as Australian of the Year. CLICK HERE TO NOMINATE OUR NEXT AUSTRALIAN OF THE YEAR With his young, WA-based grandson Cooper watching on, he urged the 200 students to face life's challenges with strength and positivity. "What do you wish for someone you love?" he asked. "Most people would say 'I want them to be happy' or healthy or to find something they're passionate about, or maybe to find love; and all of that is important. "But today, I want to give you an alternative. The one thing I really wish for Cooper - and for you - is to learn how to be resilient. "Resilience is simply the ability to bounce back from setbacks, adapt to change and keep going when things get tough. It doesn't mean you don't feel pain, disappointment or frustration. It means you don't let those feelings define you or stop you from moving forward. "You have to find the courage to take responsibility, not to pass the buck, not to procrastinate, not to make excuses. You have to summon something from within you, from the better side of your character, and let it help you rise up." Who inspires you? Who do you think should be our next Australian of the Year? If you see them or hear about them, nominate them before July 31 for the 2026 Australian of the Year Awards at Motor neurone disease warrior Neale Daniher has a simple but powerful message for young people in 2025: learn how to be resilient. "It's not a matter of if life gets tough, it's when and how often," the 2025 Australian of the Year said. "Character isn't just built in the good times - it's built even more in the tough times. Like a nation, like a football club, like a family, strength is forged through struggle." This long weekend the 64-year-old former Melbourne coach and Essendon player will rally the nation once again around FightMND, the charity he co-founded and which has raised $115 million for research to find a cure for the disease he has battled since 2013. FightMND's 11th annual "Big Freeze at the 'G" fundraiser takes place before the June 9 King's Birthday AFL clash between Collingwood and Melbourne. Big Freeze 11 blue beanies have been on sale at Coles and Bunnings stores in recent weeks and the MCG is expected to be a sea of blue on Monday. Inspired by the words of the philosopher Kierkegaard - "Life can only be understood backwards, but it must be lived forwards" - Daniher said: "This year we're daring everyone to live it forward. To live in the moment. To take bold steps toward a brighter future for those living with MND and in memory of those we've lost." The theme for this year's sliders is "iconic Australians" - a nod to Daniher's Australian of the Year honour. The 10 celebrities taking the toboggan plunge into a pool of ice costumed as Aussie stage, screen and sporting legends include Olympic swimmer Ariarne Titmus, actor Matt Nable (who lost his brother to MND), former Australian cricket captain and 1999 Australian of the Year Mark Taylor, Olympian and Sunrise co-host Matt Shirvington, AFL legends Peter Daicos and Aaron Davey, netballer Liz Watson and Aussie cricket captain Alyssa Healy. "Since the first Big Freeze in 2015, this movement has grown into a force of nature, fuelled by the generosity of Australians across the country," Daniher says. "The generosity and unwavering spirit of the community has inspired change and fuelled hope." A year after his diagnosis, Daniher co-founded FightMND with Dr Ian Davis and Pat Cunningham. Sadly, MND has since claimed the lives of Dr Davis and Mr Cunningham's wife Angie, but the legacy they created with Daniher lives on. "Neale is an inspiration to many millions of Australians," AFL CEO Andrew Dillon, a FightMND board member, said. "His achievements on the footy field were remarkable, while his legacy off the field in helping raise awareness and find a cure for MND is legendary. There is no bigger champion than Neale, as he continues to amaze us with his resilience, passion and drive, all while keeping his cheeky Daniher wit." While MND has robbed the West Wyalong-born, Riverina-raised Daniher of the ability to speak, he uses eye-gaze technology to communicate. When he accepted his Australian of the Year Award in Canberra in January, his speech was read by a robotic voice. But the voice now sounds like the real Neale thanks to AI and recordings of his media conferences from his coaching days. "It's much better than the robot voice I had, but I don't sit around listening to myself all day," Daniher told 7News. He recently took his message in person to school students in Perth - his first official interstate trip as Australian of the Year. CLICK HERE TO NOMINATE OUR NEXT AUSTRALIAN OF THE YEAR With his young, WA-based grandson Cooper watching on, he urged the 200 students to face life's challenges with strength and positivity. "What do you wish for someone you love?" he asked. "Most people would say 'I want them to be happy' or healthy or to find something they're passionate about, or maybe to find love; and all of that is important. "But today, I want to give you an alternative. The one thing I really wish for Cooper - and for you - is to learn how to be resilient. "Resilience is simply the ability to bounce back from setbacks, adapt to change and keep going when things get tough. It doesn't mean you don't feel pain, disappointment or frustration. It means you don't let those feelings define you or stop you from moving forward. "You have to find the courage to take responsibility, not to pass the buck, not to procrastinate, not to make excuses. You have to summon something from within you, from the better side of your character, and let it help you rise up." Who inspires you? Who do you think should be our next Australian of the Year? If you see them or hear about them, nominate them before July 31 for the 2026 Australian of the Year Awards at Motor neurone disease warrior Neale Daniher has a simple but powerful message for young people in 2025: learn how to be resilient. "It's not a matter of if life gets tough, it's when and how often," the 2025 Australian of the Year said. "Character isn't just built in the good times - it's built even more in the tough times. Like a nation, like a football club, like a family, strength is forged through struggle." This long weekend the 64-year-old former Melbourne coach and Essendon player will rally the nation once again around FightMND, the charity he co-founded and which has raised $115 million for research to find a cure for the disease he has battled since 2013. FightMND's 11th annual "Big Freeze at the 'G" fundraiser takes place before the June 9 King's Birthday AFL clash between Collingwood and Melbourne. Big Freeze 11 blue beanies have been on sale at Coles and Bunnings stores in recent weeks and the MCG is expected to be a sea of blue on Monday. Inspired by the words of the philosopher Kierkegaard - "Life can only be understood backwards, but it must be lived forwards" - Daniher said: "This year we're daring everyone to live it forward. To live in the moment. To take bold steps toward a brighter future for those living with MND and in memory of those we've lost." The theme for this year's sliders is "iconic Australians" - a nod to Daniher's Australian of the Year honour. The 10 celebrities taking the toboggan plunge into a pool of ice costumed as Aussie stage, screen and sporting legends include Olympic swimmer Ariarne Titmus, actor Matt Nable (who lost his brother to MND), former Australian cricket captain and 1999 Australian of the Year Mark Taylor, Olympian and Sunrise co-host Matt Shirvington, AFL legends Peter Daicos and Aaron Davey, netballer Liz Watson and Aussie cricket captain Alyssa Healy. "Since the first Big Freeze in 2015, this movement has grown into a force of nature, fuelled by the generosity of Australians across the country," Daniher says. "The generosity and unwavering spirit of the community has inspired change and fuelled hope." A year after his diagnosis, Daniher co-founded FightMND with Dr Ian Davis and Pat Cunningham. Sadly, MND has since claimed the lives of Dr Davis and Mr Cunningham's wife Angie, but the legacy they created with Daniher lives on. "Neale is an inspiration to many millions of Australians," AFL CEO Andrew Dillon, a FightMND board member, said. "His achievements on the footy field were remarkable, while his legacy off the field in helping raise awareness and find a cure for MND is legendary. There is no bigger champion than Neale, as he continues to amaze us with his resilience, passion and drive, all while keeping his cheeky Daniher wit." While MND has robbed the West Wyalong-born, Riverina-raised Daniher of the ability to speak, he uses eye-gaze technology to communicate. When he accepted his Australian of the Year Award in Canberra in January, his speech was read by a robotic voice. But the voice now sounds like the real Neale thanks to AI and recordings of his media conferences from his coaching days. "It's much better than the robot voice I had, but I don't sit around listening to myself all day," Daniher told 7News. He recently took his message in person to school students in Perth - his first official interstate trip as Australian of the Year. CLICK HERE TO NOMINATE OUR NEXT AUSTRALIAN OF THE YEAR With his young, WA-based grandson Cooper watching on, he urged the 200 students to face life's challenges with strength and positivity. "What do you wish for someone you love?" he asked. "Most people would say 'I want them to be happy' or healthy or to find something they're passionate about, or maybe to find love; and all of that is important. "But today, I want to give you an alternative. The one thing I really wish for Cooper - and for you - is to learn how to be resilient. "Resilience is simply the ability to bounce back from setbacks, adapt to change and keep going when things get tough. It doesn't mean you don't feel pain, disappointment or frustration. It means you don't let those feelings define you or stop you from moving forward. "You have to find the courage to take responsibility, not to pass the buck, not to procrastinate, not to make excuses. You have to summon something from within you, from the better side of your character, and let it help you rise up." Who inspires you? Who do you think should be our next Australian of the Year? If you see them or hear about them, nominate them before July 31 for the 2026 Australian of the Year Awards at
News.com.au
17 hours ago
- Health
- News.com.au
AFL 2025: Collingwood key forward edges closer to return from injury
Collingwood forward Dan McStay is closing in on a return in the King's Birthday clash with Melbourne on Monday. McStay sustained an MCL tear to his left knee in the Magpies' win over Essendon on Anzac Day. The addition of McStay would be a timely boost to the Magpies front half after small forward Lachie Schultz injured his hamstring against Hawthorn last Friday. Collingwood coach Craig McRae says McStay's 'magnet is getting really close'. 'There's a big chance Dan will be available, we're not quite ready to announce that, he's still got a little to go, we train Friday and then again Sunday,' he said. 'But his magnet is getting really close to being considered, just a couple of little things to tick off before we can announce that.' Bobby Hill was absent from Collingwood's main training on Wednesday morning to deal with a family illness. But, barring any curveballs to his own health, McRae expects Hill to front the Dees for his 100th game. 'Bobby's wife and kids are sick, he's home looking after them, we give him compassionate leave to do those (things),' he said. 'One of our welfare team went and trained with him this afternoon, hopefully he plays his 100th game this weekend. 'At this stage, barring him getting sick, that will be the case.' The Fight MND cause extended beyond the occasion and Neale Daniher for McRae a couple of years ago, when his brother in-law, Pat, was diagnosed with MND. 'Yeah it is close to home, Pat got diagnosed literally the MND round a couple years ago,' McRae said. 'He's my wife's brother, it's a tough one, like Bec (Daniher) said, the sea blue beanies is going to offer home – that's Pat's words. 'Maybe it's not in his lifetime but there's an opportunity to pay it forward for the possibility of the future. 'The work the Daniher's have done and he's speaking to us, to hear his wisdom, his want and desire for a cure. '11 years he's been fighting this beast and every year it feels like we're getting behind it more and more.'
News.com.au
2 days ago
- Business
- News.com.au
Peter Gelagotis Racing in drive to raise funds for motor neurone disease in month of June
Three-year-old stayer Thunder Zeus would contribute to one of Australian sport's greatest causes if he saluted at Flemington on Saturday. Thunder Zeus will carry the official FightMND silks as part of the Neale Daniher-inspired drive to raise funds for research into motor neurone disease. The King's Birthday weekend is the high point of FightMND's fundraising campaign as celebrities slide into icy water at Monday's AFL game between Collingwood and Melbourne. The Peter Gelagotis stable is doing its bit for the cause with all its runners to carry the FightMND colours during the month of June. Southside Racing and Racing Victoria will donate $1000 for each winner the stable prepares with the yellow and black silks this month. Stable manager Manny Gelagotis said the FightMND cause resonated with him in his capacity as the president of the Moe Lions Football Club. 'We're doing this in conjunction with the Moe Lions where Neale Daniher's son Ben has played for the last four or five years,' Gelagotis said. 'That's how the connection was made and I've got to know the family well.' Gelagotis said the Moe Lions would hold its annual FightMND fundraiser at its game on Saturday while Thunder Zeus hopefully fought out the finish of a three-year-old race over 2000m at Flemington. 'It's my passion to drive it through my two interests in racing and the footy club,' Gelagotis said. 'We've got many people like Peter Daicos, Nathan Buckley, Sam Kekovich and Denis Pagan that have all done videos for us to help raise awareness. 'The big event happens at Ted Summerton (Oval) on Saturday and it's turned into a really big thing because a lot of other leagues don't play on the long weekend so we get heaps of people coming from everywhere. 'Health-permitting, we hope Neale is going to be there but it's a day-to-day thing and it's been so powerful when he has made it in the past.' Thunder Zeus will head to Flemington as a last-start winner of a maiden over 2080m. Gelagotis said the son of Night Of Thunder was an improving young stayer with plenty of potential. 'He was too good for them at Cranbourne and he's getting better all the time,' Gelagotis said. 'He's going really well but it would be great to see the FightMND colours at Flemington to raise awareness with the racing people.'
7NEWS
4 days ago
- Entertainment
- 7NEWS
Aussie actor Matt Nable to honour late brother Aaron as Big Freeze slider
Former rugby league player turned Australian actor Matt Nable has been unveiled as a Big Freeze slider alongside cricket great Mark Taylor. Nable will take the plunge at the King's Birthday AFL blockbuster next week just over a year after his brother Aaron died from MND. Aaron was diagnosed in July 2022 and died in March 2024 aged just 46. Know the news with the 7NEWS app: Download today Nable first spoke with the Daniher family in the weeks after Aaron's death, teaming up with FightMND in the lead-up to Big Freeze 11. The looming occasion has already weighed heavily. 'These were good days,' he wrote, sharing an old photo of his brother in the boxing gym. 'Boxing unearthed a toughness in Aaron that kept him alive. His fight will never be forgotten. 'I've missed him this last week so very much. 'Next weekend is the Big Freeze, and I'm honoured and humbled to be a part of it with Bec Daniher, FightMND and her warrior dad Neale Daniher.' Nable, who has also taken on NRL commentary and voiceover roles in recent years, featured in FightMND promotions with fellow actors Asher Keddie, Eric Bana and Channel 7's own Abbey Holmes last month. He will be joined as a slider next Monday by Taylor, AFL great Peter Daicos and Olympic champion Ariarne Titmus. This year's theme is 'iconic Australians' in a nod to Neale Daniher's Australian of the Year honour. Unfiltered on Wednesday night.
