Latest news with #ClareSullivan
The Advertiser
06-07-2025
- Health
- The Advertiser
Data registry funds plea in fight against MND
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 and has documented her journey on social media. "MND is not an incurable disease, we just haven't found the cure yet." 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 2700 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," Ms Sullivan said. 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 and has documented her journey on social media. "MND is not an incurable disease, we just haven't found the cure yet." 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 2700 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," Ms Sullivan said. 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 and has documented her journey on social media. "MND is not an incurable disease, we just haven't found the cure yet." 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 2700 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," Ms Sullivan said. 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 and has documented her journey on social media. "MND is not an incurable disease, we just haven't found the cure yet." 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 2700 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," Ms Sullivan said.
West Australian
06-07-2025
- Health
- West Australian
Data registry funds plea in fight against MND
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 and has documented her journey on social media. "MND is not an incurable disease, we just haven't found the cure yet." 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 2700 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," Ms Sullivan said.
Perth Now
06-07-2025
- Health
- Perth Now
Data registry funds plea in fight against MND
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 and has documented her journey on social media. "MND is not an incurable disease, we just haven't found the cure yet." 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 2700 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," Ms Sullivan said.
News.com.au
04-06-2025
- 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.
BBC News
18-04-2025
- General
- BBC News
Swansea: Church that survived Nazi bombers celebrates 200 years
A landmark chapel in the centre of Swansea that survived a Nazi bomb is preparing to celebrate its 200th anniversary with special services over Pleasant chapel is one of the city's most historic buildings and stands on the Kingsway in an area that was largely flattened during the Blitz, when the German Luftwaffe bombed the city in February 1941."When you see all the pictures of the Blitz and all the buildings around the chapel gone, it is amazing that the chapel is still standing" said Clare Sullivan, one of the chapel with Corinthian pillars seats about 800 people. It cost £4,510 to build, a huge undertaking for the church's 54 members at the time. Swansea was an important industrial town and port, and the early worshippers were probably involved in the copper smelting and refining industry that had transformed Swansea into a major global centre for copper processing. It's nickname was Tom Martin said the bombing destroyed the area around the chapel and it was rebuilt after the war. "We are in the middle of the busy Kingsway in the city centre with lots of modern buildings around us," he said. "Their predecessors didn't survive the blitz, but the Mount did."Today the exterior of the chapel looks very much as it did when it was first built, but the interior had been changed with the pews removed from the ground floor to create an all-purpose open space. On Wednesdays and Saturdays it morphs into a café, explained church elder Jimmy Christie."There was a time a lot of people went past the railings and gates, and wondered perhaps what this wonderful building was," he said. "But now we have a wide pavement outside and we hold our open air café there as well as in the chapel itself. "We have opened the doors and opened the railings up and people are getting to know us."Some of the neighbourhoods surrounding the chapel were amongst the most deprived in the UK," said chapel pastor Dafydd Taylor. "There's a great need in Swansea, a lot of people with addictions to drugs and alcohol, in and out of prison or who are homeless," he said. "We offer them hope, we have at least 4 members who used to have addiction problems, and we have helped them turn their lives around."
