Big Freeze shines a light on MND – and the Aussie tech helping sufferers take back control

News.com.au

2 days ago

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.