Big Freeze shines a light on MND – and the Aussie tech helping sufferers take back control
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.
Hashtags
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
ABC News
41 minutes ago
- ABC News
INTERVIEW: Leaving construction to fight the industry's mental health crisis
Despite the physical dangers of the job, the leading cause of death among construction workers isn't job site accidents. It's suicide. So what's fuelling it? And what can you do if you or someone you know is struggling? We've been unpacking the industry's hidden hazards with someone who's lived through them: Dr Simon Tyler, who now works as a psychologist helping to address the high rates of suicide within construction. When we ran a shorter cut of this interview on the radio show, it had a huge response from people wanting to talk about it. In this extended interview, Dr Tyler shares more of his insights and experiences, and also offers some advice. And remember, Lifeline is there on 13 11 14. Guest: Dr Simon Tyler, psychologist and men's mental health researcher Get the whole story from Hack:
News.com.au
8 hours ago
- News.com.au
Western Sydney mum pushes for new retail safety standards after her two-year-old nearly lost an eye from low hanging merchandise rack
A western Sydney mum is looking to change the safety measures in retail stores after an incident nearly left her two-year-old blinded. Maureen Ahluwalia was with her daughter Amaira and sister-in-law at her local Blacktown Westpoint shopping centre on July 8 when the incident occurred. Mrs Ahluwalia said her daughter was walking right beside her – as she commonly does – when the scary incident happened. 'She's just turned and the rack hook's gone in her eye. I tried to calm her down, literally her eyelid was inside out,' she told NewsWire. 'I saw when she opened her eye that there's blood coming into it.' Mrs Ahluwalia's sister-in-law advised taking Amaira to Specsavers in the shopping centre, who took her in immediately and gave some relieving news. 'They said she didn't scratch her cornea, she was very lucky to miss it by less than a millimetre. If it was, she would have had some damage to her vision or even blindness.' After repeated requests, Mrs Ahluwalia said she finally received a call from Harris Scarfe more than six days later, a courtesy call from the risk management team. They also declined to provide the CCTV footage. 'They weren't interested in looking into why this happened or if we need to change our hooks or anything … it wasn't a priority for them.' Left with a growing blood clot, Amaira eventually recovered, but not before her mother came across a string of similar incidents that shocked her. Kmart, Target and Rebel Sport were among the first to respond back in 2020, adding soft rubbers and plastics over the ends of apparel hooks, however, Mrs Ahluwalia is now putting a different question to shops. 'Why are we not doing more? And why do these hooks still exist at toddler height? 'Kids have lost their vision over it, kids have ended up in hospital, with permanent damage. 'That's when I knew this is a real problem, this is not a parent's fault. It's is beyond that.' The mother has since begun a NSW parliamentary petition to adjust the safety standards of retail fixtures in Australia, requiring 20,000 votes to be heard in parliament. The petition will be presented by Labor MP for Blacktown Stephen Bali, who has backed the move. While she has received messages of encouragement, Mrs Ahluwalia has also been met with backlash from users online claiming the incident was a personal fault. 'Keep your kids in the car. A lot safer there,' one user responded. 'Preventable with a parent doing their job' another claimed. But she has backed her stance, citing her plea to push for better safety standards for children. 'It's the same as having a fence around the pool. Why do we do that? Why do have booster seats for kids? These are all safety measures to prevent what can possibly happen,' she said. 'This is not about paying attention to your kids. My daughter was two steps away from me. 'I'd never spoken about compensation, it's not something I'm interested in. 'But no money could ever bring back my daughter's eye if she had lost it.'
ABC News
8 hours ago
- ABC News
Health Minister Mark Butler announces $2 billion Thriving Kids program
SARAH FERGUSON, PRESENTER: Health Minister Mark Butler announced a major change to the NDIS today in an effort to rein in the costs of the scheme, that were $42 billion last year and forecast to keep growing. Children with autism or developmental delays make up 44 per cent of the scheme. Beginning in mid-2027, many of those children will now be diverted to a new program called Thriving Kids. I spoke to the Health Minister earlier. Mark Butler, welcome to 7.30. MARK BUTLER, HEALTH MINISTER: Thank you, Sarah. SARAH FERGUSON: In making this announcement today, you said that the NDIS was in danger of losing its social licence. Can you explain that? MARK BUTLER: Well, for a scheme that doesn't touch as many Australians, for example, as Medicare and aged care, you do need social licence. Taxpayers need to have confidence that they're getting value for the money they're investing in the scheme. And at the moment, that licence is very strong. People do recognise that the NDIS has transformed the lives of people living with disability, but they also say through research that it's costing too much. They're concerned about dodgy providers and as many as six in 10 say the NDIS is broken. And I think that is a concern to me that the social licence that is so important to underpin this terrific scheme is at risk of slipping away if taxpayers don't have confidence that we're doing the right thing to get it back on track. SARAH FERGUSON: You are proposing diverting children with mild to moderate autism or development delays away from the NDIS. So how will it work? MARK BUTLER: Well, the number of people on the NDIS is largely what we projected a decade ago, people with intellectual disabilities, cerebral palsy and those range of disabilities with one exception and that is kids with developmental delay in autism, particularly at mild to moderate levels. So not levels that are likely to be permanently disabling, which after all, is the cornerstone of the NDIS. Literally tens and tens of thousands of young kids are on this scheme that were set up for permanent disability and that's largely because there's no alternative. As I said today, it's really been the only port in a storm for parents who are worried about their kid not hitting milestones. We should have an alternative system in place for those parents and for those kids and that's what I committed to building today - a system to support those children to thrive. I think most of your viewers would be alarmed to know that one in six Grade Two boys are on the NDIS and in some parts of the country it's as high as one in four Grade Two boys are on the NDIS. We've got to do better than that because the scheme was not intended to cover those kids. SARAH FERGUSON: Now, obviously what those families, what those parents have done is go onto the NDIS because they can't get support elsewhere. So, what are you creating? What are you doing to enable those parents to find support outside of the NDIS? MARK BUTLER: Well, we need to leverage those existing systems, the infinite maternal health systems that states run. the primary care systems that we fund through Medicare. supports in community health centres that used to exist long before the NDIS but frankly have been defunded to a degree in order to pay for the National Disability Insurance Scheme. So rebuilding, refocusing those mainstream broad-based supports that have existed for long before the NDIS, that's the response you should have to what is a mainstream, broad-based issue. And that is a lot of kids do have developmental delay and autism issues, that do need support to help them thrive. The only place they can get that right now is the NDIS, and that's not the right fit for them. SARAH FERGUSON: Now, you were working on an agreement with the states to provide exactly that. I think they were called, they were going to be Foundational Supports. Does that mean that that is over now and you're starting again? MARK BUTLER: No, this is that work. I mean, I've given it much more shape, I think by describing what it means for parents - that is support to help their kids thrive right through the life course from the time they're born into the time they get into formal schooling. What I heard from states is they didn't think the Commonwealth was leading in enough. So I've said, we want to lead this process. We are going to lead in. They also said they were concerned that funding wasn't committed beyond five years. So I've made the commitment today on behalf of the Commonwealth to fund this on an ongoing basis. I did also hear though, from the sector, from parents, from providers, they didn't want to see eight different systems built up in every single state and territory. They want something that is nationally consistent across the country, and that's what I think is sensible as well. SARAH FERGUSON: So you've committed some money. What about the states? Are they pulling their weight equally with the Commonwealth in setting up this new system? MARK BUTLER: Well, at the national cabinet meeting at the end of 2023, all of the jurisdictions agreed we would set up systems to support this cohort as well as adults with serious psychosocial disability. And both of us committed $5 billion, so $5 billion from the Commonwealth, $5 billion collectively from states and territories and it's time to actually put our money where the mouth is and get this in an operational system to support those kids thriving. SARAH FERGUSON: Now, what does it mean for parents who, as they understand it now, in July, 2027, they will be diverted away from the NDIS? You get a transition period, but does that mean those parents will have their funding cut? Can you reassure them that the services will be ready? MARK BUTLER: Well, I've been very clear we're not going to start diversion from the NDIS before there's that strong, robust system to support kids thriving. So that's why there's about a two-year run up to this. We'll start rolling out those services next year. They will require some time to roll out fully to give parents confidence that they're going to get the supports that they need and want to help their kids thrive. So it is quite a run up. If kids are on the NDIS at that time, they're entitled to remain on it. They'll be subject to the usual rules of the NDIS. But I just don't think in the long term this is the right scheme for kids with mild to moderate developmental delay or autism and parents really need, and their children need, a mainstream, broad-based system of supports available in a whole range of settings that they're at very regularly to help their kids thrive and that's what I committed to delivering today. SARAH FERGUSON: And you can absolutely guarantee that those services will be in place for those families. MARK BUTLER: Absolutely. I'm very clear we're not going to leave a gap between two stalls for our precious children. We've only really given parents one option for the last several years. The one port in the storm has been the NDIS. I think there should be another option, but I'm going to make sure that option is fully up and running before we start diversion from the NDIS. That's the only right thing to do. SARAH FERGUSON: I just want to come back to the very difficult issue of fraud in the NDIS. The stories have obviously been frankly repulsive about people taking advantage of this generous system. Are you winning the battle with those shonks and fraudsters taking advantage of the NDIS? MARK BUTLER: Well, we had to start from scratch. The National Audit Office said before 2024, so the scheme had been running for over a decade, there was effectively no real control on fraud and non-compliance within the NDIS. So we've had to build it up from scratch. Bill Shorten, to his credit, started that work and already we've had hundreds of investigations, search warrants, and we are starting to crack down, but we've got 260,000 service providers in this scheme, only 16,000 of whom are registered. So we have precious little line of sight about who they are, what they're doing, what their qualifications are. We need more work on fraud, and we've committed to that again today. But we also, frankly, need a more robust system of provider registration, the sort of which you see in aged care, in veterans care, in the health system, and frankly should exist in the NDIS as well. Health Minister Mark Butler speaks to Sarah Ferguson about a new program to divert children with autism and developmental delays from the NDIS.
