Latest news with #MNDAustralia
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.
The Advertiser
27-06-2025
- Health
- The Advertiser
How Graham is tackling life, one year after he was diagnosed with an incurable disease
A year ago, Graham Lancaster received news that could have completely upended his life. The well-known regional lawyer was told he had the incurable degenerative condition motor neurone disease (MND). It's something he is conscious of every day, and he is proactive in taking steps to try and slow the disease's progression. But generally, life has rolled on: he continues to work, indulge in his interests, and maintain his sense of humour, although he admits it can slant a little dark sometimes. "The concept of the one-year anniversary coming up is significant because, in that time, I haven't had a lot of symptoms and my progression has been very slow, and the doctors have confirmed that," Mr Lancaster said. There are reminders of the illness: the morning he spoke to the Mercury, his tricep started twitching, a symptom of MND. "I went, 'Alright, you're reminding me you're still there', " he said. Mr Lancaster received a provisional diagnosis of MND, an incurable degenerative illness, on June 24, 2024, after he pushed for tests when he realised he had muscle wasting in his right hand. That blow came just days after Global MND Awareness Day, which is marked annually on June 21. Ten days after the provisional diagnosis, doctors confirmed Mr Lancaster had sporadic amyotrophic lateral sclerosis (ALS), a form of the disease for which the cause is not known. Mr Lancaster is receiving treatment from his doctors, including a trial of a drug called Ambroxol, and has appointments every three months to track the progression of his illness. But he is also on a regimen of vitamin supplements and other therapies, which he has found through online communities and his own searches, which he hopes will inhibit the disease's progression. Mr Lancaster said the number of people who died of MND within a year or two of diagnosis suggested to him that "late diagnosis is a very real problem". MND Australia says the average survival time after diagnosis is two and a half years. "I was lucky to get diagnosed early, so I got on to doing things early, and you know, I do believe that has helped to slow the progression," Mr Lancaster said. "If you get diagnosed late, you're already on a pathway of cascading issues and problems, and it's hard to turn all of that back and climb your way back up from that." Mr Lancaster plans to beat the expected survival period of two to five years. Not only has he taken steps to slow the MND, but he has put more energy into improving his general health. Unfortunately, he had to give up cheer - at one point, he was Australia's oldest male cheerleader - because he doesn't want to let his team down should he become unable to attend competitions. But as a dedicated supporter of the Illawarra Hawks, Mr Lancaster has remained a prominent sight at the basketball team's home games since his diagnosis, always sporting his distinctive double-horned red-and-black Vikings hat. "I will be going to the Hawks games for as long as I can," he said. "The seat we have at the stadium, if I've got to crawl down to that seat, I will crawl down to that seat and crawl back up the steps." "As far as purpose, I think that having a job that I love means that I get in, I get things done, and that keeps me going as well," Mr Lancaster said. He also has another very special motivating factor: he and his wife, Cath, will become grandparents for the first time later this year when their daughter Sarah (they also have a son, Patrick) welcomes her first child with husband Jordan. Mr Lancaster said Cath had supported his efforts to slow his disease - but added that she didn't let him get out of jobs around the house just because he had MND. His goal is not just to live as long as he can, but to live well and help others. To that end, he shares information he's learnt with others experiencing MND and offers support. "I've come to embrace the ALS," he said. "I don't want to spend a lot of energy fighting it, per se. I think I'm working with it, and it's just something that's part of the day now." A year ago, Graham Lancaster received news that could have completely upended his life. The well-known regional lawyer was told he had the incurable degenerative condition motor neurone disease (MND). It's something he is conscious of every day, and he is proactive in taking steps to try and slow the disease's progression. But generally, life has rolled on: he continues to work, indulge in his interests, and maintain his sense of humour, although he admits it can slant a little dark sometimes. "The concept of the one-year anniversary coming up is significant because, in that time, I haven't had a lot of symptoms and my progression has been very slow, and the doctors have confirmed that," Mr Lancaster said. There are reminders of the illness: the morning he spoke to the Mercury, his tricep started twitching, a symptom of MND. "I went, 'Alright, you're reminding me you're still there', " he said. Mr Lancaster received a provisional diagnosis of MND, an incurable degenerative illness, on June 24, 2024, after he pushed for tests when he realised he had muscle wasting in his right hand. That blow came just days after Global MND Awareness Day, which is marked annually on June 21. Ten days after the provisional diagnosis, doctors confirmed Mr Lancaster had sporadic amyotrophic lateral sclerosis (ALS), a form of the disease for which the cause is not known. Mr Lancaster is receiving treatment from his doctors, including a trial of a drug called Ambroxol, and has appointments every three months to track the progression of his illness. But he is also on a regimen of vitamin supplements and other therapies, which he has found through online communities and his own searches, which he hopes will inhibit the disease's progression. Mr Lancaster said the number of people who died of MND within a year or two of diagnosis suggested to him that "late diagnosis is a very real problem". MND Australia says the average survival time after diagnosis is two and a half years. "I was lucky to get diagnosed early, so I got on to doing things early, and you know, I do believe that has helped to slow the progression," Mr Lancaster said. "If you get diagnosed late, you're already on a pathway of cascading issues and problems, and it's hard to turn all of that back and climb your way back up from that." Mr Lancaster plans to beat the expected survival period of two to five years. Not only has he taken steps to slow the MND, but he has put more energy into improving his general health. Unfortunately, he had to give up cheer - at one point, he was Australia's oldest male cheerleader - because he doesn't want to let his team down should he become unable to attend competitions. But as a dedicated supporter of the Illawarra Hawks, Mr Lancaster has remained a prominent sight at the basketball team's home games since his diagnosis, always sporting his distinctive double-horned red-and-black Vikings hat. "I will be going to the Hawks games for as long as I can," he said. "The seat we have at the stadium, if I've got to crawl down to that seat, I will crawl down to that seat and crawl back up the steps." "As far as purpose, I think that having a job that I love means that I get in, I get things done, and that keeps me going as well," Mr Lancaster said. He also has another very special motivating factor: he and his wife, Cath, will become grandparents for the first time later this year when their daughter Sarah (they also have a son, Patrick) welcomes her first child with husband Jordan. Mr Lancaster said Cath had supported his efforts to slow his disease - but added that she didn't let him get out of jobs around the house just because he had MND. His goal is not just to live as long as he can, but to live well and help others. To that end, he shares information he's learnt with others experiencing MND and offers support. "I've come to embrace the ALS," he said. "I don't want to spend a lot of energy fighting it, per se. I think I'm working with it, and it's just something that's part of the day now." A year ago, Graham Lancaster received news that could have completely upended his life. The well-known regional lawyer was told he had the incurable degenerative condition motor neurone disease (MND). It's something he is conscious of every day, and he is proactive in taking steps to try and slow the disease's progression. But generally, life has rolled on: he continues to work, indulge in his interests, and maintain his sense of humour, although he admits it can slant a little dark sometimes. "The concept of the one-year anniversary coming up is significant because, in that time, I haven't had a lot of symptoms and my progression has been very slow, and the doctors have confirmed that," Mr Lancaster said. There are reminders of the illness: the morning he spoke to the Mercury, his tricep started twitching, a symptom of MND. "I went, 'Alright, you're reminding me you're still there', " he said. Mr Lancaster received a provisional diagnosis of MND, an incurable degenerative illness, on June 24, 2024, after he pushed for tests when he realised he had muscle wasting in his right hand. That blow came just days after Global MND Awareness Day, which is marked annually on June 21. Ten days after the provisional diagnosis, doctors confirmed Mr Lancaster had sporadic amyotrophic lateral sclerosis (ALS), a form of the disease for which the cause is not known. Mr Lancaster is receiving treatment from his doctors, including a trial of a drug called Ambroxol, and has appointments every three months to track the progression of his illness. But he is also on a regimen of vitamin supplements and other therapies, which he has found through online communities and his own searches, which he hopes will inhibit the disease's progression. Mr Lancaster said the number of people who died of MND within a year or two of diagnosis suggested to him that "late diagnosis is a very real problem". MND Australia says the average survival time after diagnosis is two and a half years. "I was lucky to get diagnosed early, so I got on to doing things early, and you know, I do believe that has helped to slow the progression," Mr Lancaster said. "If you get diagnosed late, you're already on a pathway of cascading issues and problems, and it's hard to turn all of that back and climb your way back up from that." Mr Lancaster plans to beat the expected survival period of two to five years. Not only has he taken steps to slow the MND, but he has put more energy into improving his general health. Unfortunately, he had to give up cheer - at one point, he was Australia's oldest male cheerleader - because he doesn't want to let his team down should he become unable to attend competitions. But as a dedicated supporter of the Illawarra Hawks, Mr Lancaster has remained a prominent sight at the basketball team's home games since his diagnosis, always sporting his distinctive double-horned red-and-black Vikings hat. "I will be going to the Hawks games for as long as I can," he said. "The seat we have at the stadium, if I've got to crawl down to that seat, I will crawl down to that seat and crawl back up the steps." "As far as purpose, I think that having a job that I love means that I get in, I get things done, and that keeps me going as well," Mr Lancaster said. He also has another very special motivating factor: he and his wife, Cath, will become grandparents for the first time later this year when their daughter Sarah (they also have a son, Patrick) welcomes her first child with husband Jordan. Mr Lancaster said Cath had supported his efforts to slow his disease - but added that she didn't let him get out of jobs around the house just because he had MND. His goal is not just to live as long as he can, but to live well and help others. To that end, he shares information he's learnt with others experiencing MND and offers support. "I've come to embrace the ALS," he said. "I don't want to spend a lot of energy fighting it, per se. I think I'm working with it, and it's just something that's part of the day now." A year ago, Graham Lancaster received news that could have completely upended his life. The well-known regional lawyer was told he had the incurable degenerative condition motor neurone disease (MND). It's something he is conscious of every day, and he is proactive in taking steps to try and slow the disease's progression. But generally, life has rolled on: he continues to work, indulge in his interests, and maintain his sense of humour, although he admits it can slant a little dark sometimes. "The concept of the one-year anniversary coming up is significant because, in that time, I haven't had a lot of symptoms and my progression has been very slow, and the doctors have confirmed that," Mr Lancaster said. There are reminders of the illness: the morning he spoke to the Mercury, his tricep started twitching, a symptom of MND. "I went, 'Alright, you're reminding me you're still there', " he said. Mr Lancaster received a provisional diagnosis of MND, an incurable degenerative illness, on June 24, 2024, after he pushed for tests when he realised he had muscle wasting in his right hand. That blow came just days after Global MND Awareness Day, which is marked annually on June 21. Ten days after the provisional diagnosis, doctors confirmed Mr Lancaster had sporadic amyotrophic lateral sclerosis (ALS), a form of the disease for which the cause is not known. Mr Lancaster is receiving treatment from his doctors, including a trial of a drug called Ambroxol, and has appointments every three months to track the progression of his illness. But he is also on a regimen of vitamin supplements and other therapies, which he has found through online communities and his own searches, which he hopes will inhibit the disease's progression. Mr Lancaster said the number of people who died of MND within a year or two of diagnosis suggested to him that "late diagnosis is a very real problem". MND Australia says the average survival time after diagnosis is two and a half years. "I was lucky to get diagnosed early, so I got on to doing things early, and you know, I do believe that has helped to slow the progression," Mr Lancaster said. "If you get diagnosed late, you're already on a pathway of cascading issues and problems, and it's hard to turn all of that back and climb your way back up from that." Mr Lancaster plans to beat the expected survival period of two to five years. Not only has he taken steps to slow the MND, but he has put more energy into improving his general health. Unfortunately, he had to give up cheer - at one point, he was Australia's oldest male cheerleader - because he doesn't want to let his team down should he become unable to attend competitions. But as a dedicated supporter of the Illawarra Hawks, Mr Lancaster has remained a prominent sight at the basketball team's home games since his diagnosis, always sporting his distinctive double-horned red-and-black Vikings hat. "I will be going to the Hawks games for as long as I can," he said. "The seat we have at the stadium, if I've got to crawl down to that seat, I will crawl down to that seat and crawl back up the steps." "As far as purpose, I think that having a job that I love means that I get in, I get things done, and that keeps me going as well," Mr Lancaster said. He also has another very special motivating factor: he and his wife, Cath, will become grandparents for the first time later this year when their daughter Sarah (they also have a son, Patrick) welcomes her first child with husband Jordan. Mr Lancaster said Cath had supported his efforts to slow his disease - but added that she didn't let him get out of jobs around the house just because he had MND. His goal is not just to live as long as he can, but to live well and help others. To that end, he shares information he's learnt with others experiencing MND and offers support. "I've come to embrace the ALS," he said. "I don't want to spend a lot of energy fighting it, per se. I think I'm working with it, and it's just something that's part of the day now."
