Latest news with #NealeDaniher
SBS Australia
07-07-2025
- Health
- SBS Australia
We 'don't know a lot' about motor neurone disease. This is what advocates say needs to change
A rare debilitating disease that eats away at the nervous system to shut down the body claims the lives of two people in Australia each day and two more are diagnosed. Motor neurone disease (MND) robs individuals of the ability to walk, talk, swallow, and eventually breathe, as it impairs nerve cells responsible for transmitting signals from the brain and spinal cord to the muscles. With no known cure and limited treatment options, health advocates are calling on the government to launch a data registry, with $12 million needed to know the extent of the illness nationwide and target specific support to affected patients. One of them is 41-year-old Canberra mother Sharon, who is confined to a wheelchair. She started noticing a slight limp and other minor issues with her right leg and foot when she was playing netball. Within six months of being diagnosed in 2018 she started using a walker for short distances and a scooter for longer distances. She later had a feeding tube inserted and transitioned to using a wheelchair. "MND impacts every part of my body and every aspect of my life, but I'm just as intelligent and switched on as I've ever been," she said. The mother of two of boys communicates using an eye-gaze technology machine which converts pre-recorded sentences into words. She has documented her journey on social media. "MND is not an incurable disease, we just haven't found the cure yet." Former AFL great Neale Daniher has campaigned for more MND research since being diagnosed. More research needs to be done and consolidated through a national database on the causes of the disease, MND Australia CEO Clare Sullivan said. "It's one of those diseases we still don't know a lot about, there's no specific diagnosis," she told AAP. "You have to exclude everything else, and then you're left with motor neurone disease. "That also goes to why we need better data. We don't even know how many people in Australia have motor neurone disease." It's estimated that it affects about one in 10,000 people with about 2,700 people in the country battling the degenerative condition, according to official figures extrapolated from different sources. The average life expectancy for a person diagnosed with MND is between two to three years. In a report published by the peak body earlier this year, it put the cost of the devastating disease at about $4.85 billion based on lost productivity, the unpaid carer burden and direct healthcare system costs. "As a country, we can be much more empathetic and inclusive of people with disabilities," Sullivan said.
West Australian
29-06-2025
- Sport
- West Australian
Mines Rovers players brave icy plunge to raise funds for MND
Winter weather failed to deter Mines Rovers Football Club members from braving icy waters in the fight against motor neurone disease. Almost a dozen Diorites took on the Big Freeze ice dunk at Digger Daws Oval on Saturday to help raise awareness and vital research funds for FightMND — co-founded by AFL great Neale Daniher. Now in its 11th year, the annual fundraiser is a symbol of hope in the fight against MND. Mines Rovers treasurer Nicole Stevens, who co-ordinated the event, said the club had surpassed its $5000 target and raised almost $7000 as of Saturday afternoon. She said MND was an important cause to get behind. 'We've been watching the AFL do the Big Freeze for a long time now . . . so we thought we'll get involved as well,' Ms Stevens said. 'Neale Daniher is a legend in the AFL, and we all grew up watching him. 'The more people you speak to about MND, the more you find out that it is affecting family members or friends.' Some participants donned wacky outfits while taking the plunge. Sam Burge wore a Mr Incredible suit, Ben Stubbs dressed as singer Pitbull, while Brad Dick completed the plunge with a cricket bat. 'It was cold, but all for a good cause, so I'm happy to do it,' Mr Dick said. 'Our skipper, Jordan Delbridge, won the B-grade grand final for North Kalgoorlie (Cricket Club) so I just thought I'd go and honour him.' Ben Stubbs thanked the football community for supporting the cause. 'The whole community has got behind this great event, just look at the turnout today,' he said. 'It's my first time freezing myself in public, but it was heaps of fun.' A Junior Big Freeze took place on Sunday when Mines Rovers' youngsters were joined by their counterparts from Kalgoorlie City to brave the ice bath for a 'cold' coin donation.
Daily Mail
10-06-2025
- Entertainment
- Daily Mail
Footy fan spots a VERY bizarre sight at the MCG - but there's a simple explanation
A footy supporter who took in the Magpies vs Demons match at the MCG on Monday night has photographed what a rarely seen part of the MCG that will be a surprise to most Aussie sport fans. The full house sign went up at the Melbourne Cricket Ground on the King's Birthday for the clash between Collingwood and Melbourne, which also featured the annual FightMND Big Freeze in honour of Demons champion Neale Daniher. But while most of the 100,000-plus crowd was focused on the ice slides and the footy, one diehard snapped a part of the stadium they'd never noticed before. 'What is this library looking room at the MCG?,' they posted to Reddit. The answer, as it turns out, is rather straightforward: it is the Melbourne Cricket Club library, which has held a prized place at the iconic venue since 1873. 'The library looking room is a library, in fact it's the MCC library,' another Reddit user replied to the original request. Another pointed out that it is actually a hidden secret for those looking to find new treasures in Melbourne. 'MCC Library - its an awesome room,' they wrote. 'When I take my 5 year old, and hes [sic] had enough watching the game (as 5yo's can do at times), we go there to read stories for a bit. 'There are always a few parents doing the same thing, and we will be sneaking each other scores while we catch up on the latest from Peppa Pig or Bluey. 'Also a top spot just to get away from the crowds and look at the city skyline.' The MCC Library at the MCG houses one of the world's leading collections of sports literature and ephemera. Founded in 1873, it began with just 13 volumes of The Australasian newspaper. Today, it holds over one million items covering 119 sports, with a focus on cricket, Australian football and the Olympic Games. The library is dedicated to preserving sports history and is a vital part of the Melbourne Cricket Club's heritage program. The collection features historical and biographical works, as well as rare memorabilia and archival materials. To celebrate its 150th anniversary in 2023, the library showcased 150 treasures from its extensive collection. The MCC Library also offers research services supported by professional staff and specialist volunteers. It remains an essential hub for sports scholars, fans, and anyone interested in the rich sporting culture of Australia. The library is part of a raft of facilites available at the MCG that might shock some footy fans - and go beyond cricket and AFL. The venue underwent a major redevelopment valued at $1billion, aimed at modernising the iconic venue. One of the headline upgrades was the complete rebuild of the Shane Warne Stand, formerly the Great Southern Stand, to boost stadium capacity to 105,000. Throughout the venue, essential public facilities were upgraded, including the installation of water fountains and universal charging stations. First aid rooms were refurbished to provide rapid response care during events. Families benefited from new parent rooms equipped with baby-change tables and private feeding spaces. Food and beverage options were diversified, with dozens of outlets offering local and international fare across all levels. Patrons now find it easier to navigate the ground thanks to improved signage, digital screens, and directional assistance. Accessibility was also prioritised, with improved wheelchair seating and enhanced entry points for patrons with mobility needs. The Melbourne Cricket Club (MCC) is one of the oldest and most prestigious sporting clubs in Australia. Founded in 1838, it is best known as the manager and custodian of the Melbourne Cricket Ground (MCG).
Sydney Morning Herald
09-06-2025
- Health
- Sydney Morning Herald
How AI technology gave Neale Daniher his voice back
AFL icon and Australian of the Year Neale Daniher lost the ability to speak because of motor neurone disease (MND), but thanks to AI technology, his family and fans can hear his voice again. Here's how the technology works. MND is a degenerative autoimmune disease that damages nerve cells in the brain and spinal cord responsible for controlling muscles, which slowly impedes the person's ability to move and speak. But the eye can be resistant to the degeneration, so eye-gaze technology has been developed to help patients communicate. Eye-gaze technology involves the user looking at a keyboard or phrases on a screen, while an infrared-sensitive camera tracks their eye as it moves. The camera uses the pupil as a centrepoint and the light reflecting off the eye to detect movement, allowing the user to spell out or select words, according to research and development company Eyegaze Inc. Daniher, 64, has used the technology to record his words which are converted into an animated voice. He was using that technology in January when he made his acceptance speech as Australian of the Year, an award bestowed on him for his fundraising efforts to find a cure for MND. The voice has a similar robotic cadence as that made famous by fellow MND sufferer Stephen Hawking, though the theoretical physicist used a cheek muscle to dictate to a computer once he lost the use of his hands. But with the latest AI developments that allow for voice cloning, Daniher has been able to communicate using a voice, tone and style that sounds remarkably like he did beforehand.
The Age
09-06-2025
- Health
- The Age
How AI technology gave Neale Daniher his voice back
AFL icon and Australian of the Year Neale Daniher lost the ability to speak because of motor neurone disease (MND), but thanks to AI technology, his family and fans can hear his voice again. Here's how the technology works. MND is a degenerative autoimmune disease that damages nerve cells in the brain and spinal cord responsible for controlling muscles, which slowly impedes the person's ability to move and speak. But the eye can be resistant to the degeneration, so eye-gaze technology has been developed to help patients communicate. Eye-gaze technology involves the user looking at a keyboard or phrases on a screen, while an infrared-sensitive camera tracks their eye as it moves. The camera uses the pupil as a centrepoint and the light reflecting off the eye to detect movement, allowing the user to spell out or select words, according to research and development company Eyegaze Inc. Daniher, 64, has used the technology to record his words which are converted into an animated voice. He was using that technology in January when he made his acceptance speech as Australian of the Year, an award bestowed on him for his fundraising efforts to find a cure for MND. The voice has a similar robotic cadence as that made famous by fellow MND sufferer Stephen Hawking, though the theoretical physicist used a cheek muscle to dictate to a computer once he lost the use of his hands. But with the latest AI developments that allow for voice cloning, Daniher has been able to communicate using a voice, tone and style that sounds remarkably like he did beforehand.
