John Worsfold and Alicia Molik among sporting greats taking part in Big Freeze event for MND research
Jordan Early, from Perth, was diagnosed five months ago and the disease has already ravaged his body, stealing his strength and speech.
But the 42-year-old is determined not to let it defeat him.
'MND is not incurable, it's underfunded,' he told 7NEWS.
'If we can raise the money to keep pushing forward, we'll solve this one day.'
The father-of-three has set himself the goal of raising $100,000 for research.
He is doing it through Jordan's Big Freeze fundraiser, with a group of sporting greats including John Worsfold, Alicia Molik, Andrew Embley and Daisy Pearce to head down a slide into a pool of icy water on Saturday at Claremont Oval.
The sliding starts at 1.45pm, prior to the WAFL match between Claremont and Peel at 2.30pm. There will be special coverage on Channel 7.
You can go online now to donate and help Jordan achieve his goal.
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
Sydney Morning Herald
an hour ago
- Sydney Morning Herald
Deanna tried IVF with the lot. None of the costly, unproven add-ons worked, so she went back to basics
Australia's health ministers last month ordered a rapid review of the nation's assisted reproductive sector following a series of bungles and scandals, to determine if greater regulation can increase the safety and transparency of fertility clinics. Victoria is leading the national review, and a Victorian government spokesperson confirmed IVF add-on services would be included in consideration of existing or potential new legislative framework. 'A dedicated team has been established to undertake the review and will report back within three months,' the spokesperson said. Australia has the fifth-highest rate of IVF, fuelled by the strength of the commercial fertility sector and Medicare rebates with broad eligibility criteria that mean patients can continue coming back for cycles regardless of their chances of success. Four out five women accessing IVF also use add-on services during their treatment, which can greatly add to their costs as well as the profits and marketability of the clinics, but which may not increase the chances of success. An analysis of the non-core services being offered to Australian fertility patients by University of Melbourne researchers, prepared for this masthead, highlights the high costs and lack of evidence supporting services commonly upsold to potentially emotionally vulnerable patients. It reveals 44 treatment types ranging from free to $5000, and taking in everything from vitamins to plasma being injected into ovaries, genetic testing of embryos, injecting a single sperm directly into an egg and endometrial scratching, have little to no influence on the chances of having a live birth, pregnancy or miscarriage. Loading The analysis follows the launch of the Evidence-based IVF website in April, which is led by the University of Melbourne's Dr Sarah Lensen as an effort to better inform people undergoing IVF of the unproven add-ons. 'There are research articles out there on these different add-ons but the quality, broadly speaking, is really poor. Different providers are willing to draw the line in different places in terms of how much evidence they think they need before they're willing to offer or recommend something,' Lensen said. 'Sometimes there's a cost for special IVF conception vitamins or whatever, but they're probably pretty low risk, and they're not as big of a deal. 'Down the other end of the spectrum, there's the super-expensive $1000 treatment options that also come with risks because they're playing with patients' immune systems or injecting things into their ovaries that we don't really know what's going to happen. 'A lot of the add-ons that get offered slip through the cracks in terms of the existing regulatory system.' In Deanna Carr's case, she underwent two normal but unsuccessful cycles of IVF before adding steroids, blood thinners, aspirin and clexane during two further cycles. Determined more had to be done, Carr followed advice from online fertility forums and moved to one of Australia's largest clinics to seek out a specialist known for pushing the envelope. 'There's lots of conversation about which specialists to see, because these specialists are willing to be a lot more experimental – and, when we say experimental, it is literally meaning experimental. 'They're willing to try more add-ons, regardless of how inclined the research is to say that it doesn't work.' Tests at that clinic found Carr had a partial DQ Alpha gene match which may make her body more likely to attack or reject an embryo, though research suggests treatment for it does not significantly improve IVF success rates. To address the issue, a team of specialists gave Carr lymphocyte membrane immunotherapy, in which up to eight vials of blood were taken from her husband so his white blood cells could be extracted and then injected into her arm to correct her immune system with material that is genetically matched to their embryo. 'It's like weird blood brother stuff, and quite expensive,' Carr said. She was given a toxic cocktail of drugs including naltrexone and tacrolimus, which are more commonly used to treat cancer, as well as an intralipid infusion to 'knock out' her immune system. Added together, this cycle cost more than $8000. 'It didn't work. It ended up the same way all our other cycles ended,' she said. Carr's specialists then offered to step up the add-on treatments even further. They proposed a $5000 EMMA and ALICE test which would have seen Carr undergo another full IVF cycle but, rather than try for a pregnancy, the doctors would take a biopsy of her uterus to see if bacteria were present that might be impacting her pregnancies. If it found abnormalities, Carr was then to be prescribed cefalexin – a common antibiotic used for infections and cheaply available on the Pharmaceutical Benefits Scheme. 'It's what the doctor would give you for a sore throat. Why would they make me pay five grand for it? Why not just give me the medication?' Rather than spending $12,000 for another add-on-laden IVF cycle, Carr consulted the Evidence-based IVF site and realised there was little science to support the proposed treatment, then switched clinics to undergo a traditional – and successful – cycle. 'You get persuaded to add on because you obviously want it to work, and you're already spending so much, so this can financially tip you over the edge,' she said. 'A lot of these IVF companies know that. It does feel really unethical [because] a lot of the time people aren't being provided with proper information around the add-ons that are being suggested and the efficacy around them. And people are really desperate, so they'll just keep saying yes to things.' A Macquarie University professor of bioethics in the discipline of philosophy, Wendy Lipworth, last year published a study based on interviews with 31 doctors working in assisted-reproductive technology to see what their 'moral justification' for using add-ons was. The specialists' responses revealed evidence and innovation was not the driving consideration in many instances, and that regulatory reforms to only allow the use of unproven treatments in the context of formal scientific evaluation might be required. Lipworth said add-ons were often marketed as a point of difference between clinics, which may undermine individual doctors' ability not to offer them for patients. As a result, she believes any new regulation would need to focus on the clinics and what they are offering, rather than individual doctors wanting the best for their patients. 'Generally, there should be some expectation that they might at least be beneficial, even if there's no good evidence for it. That's a real balancing act,' Lipworth said. 'In fertility, the balance is going a little too far in the direction of too many things being offered without enough evidence. 'There might be room for some more regulation of how the products are advertised, how patients come to know about them, what they charge for them and so on. But the very act of using them is not in and of itself in any way unethical. 'What really matters is that people know that they're getting treatment for which there is not good evidence, and that they are able to make informed decisions about whether or not to use them. Loading 'That doesn't mean that anything goes and that patients should necessarily be able to walk into a doctor's surgery and say, 'my friend saw this on Facebook', or 'my friend used this and she got pregnant, therefore I want you to offer it to me'. 'There is still a duty of care to offer things that you, at the very, very least, are absolutely certain won't do harm.' Add-ons are not the only factor separating clinics, or the fees they charge. Lensen said premium clinics typically provide continuity of care so patients always get to see the same specialist and nurse, as well as improved customer service, which may not be provided at low-cost or public clinics. And, in many cases, the proliferation of add-on services is often more patient-driven than due to marketing by doctors or their clinics – which is why Lensen believes reforms are even more important, so regulators can step in when doctors fail to uphold their responsibility to dissuade patients from treatments that may not be in their best interests. 'The evidence is not that strong, but the patients are asking for it, or the clinic down the road is offering it, and so they end up using it too. But then when the research community does come out with robust evidence later, I think they do act,' she said. 'So it would be nice if we said from 'now on, no more offering a high dose of corticosteroids to patients. If you want to do that, they can take part in a placebo controlled trial'. 'A lot of the time, though, regulations are not aligned with the commercial interests of whoever they're trying to regulate – that's the whole reason we need them.'
The Age
an hour ago
- The Age
Deanna tried IVF with the lot. None of the costly, unproven add-ons worked, so she went back to basics
Australia's health ministers last month ordered a rapid review of the nation's assisted reproductive sector following a series of bungles and scandals, to determine if greater regulation can increase the safety and transparency of fertility clinics. Victoria is leading the national review, and a Victorian government spokesperson confirmed IVF add-on services would be included in consideration of existing or potential new legislative framework. 'A dedicated team has been established to undertake the review and will report back within three months,' the spokesperson said. Australia has the fifth-highest rate of IVF, fuelled by the strength of the commercial fertility sector and Medicare rebates with broad eligibility criteria that mean patients can continue coming back for cycles regardless of their chances of success. Four out five women accessing IVF also use add-on services during their treatment, which can greatly add to their costs as well as the profits and marketability of the clinics, but which may not increase the chances of success. An analysis of the non-core services being offered to Australian fertility patients by University of Melbourne researchers, prepared for this masthead, highlights the high costs and lack of evidence supporting services commonly upsold to potentially emotionally vulnerable patients. It reveals 44 treatment types ranging from free to $5000, and taking in everything from vitamins to plasma being injected into ovaries, genetic testing of embryos, injecting a single sperm directly into an egg and endometrial scratching, have little to no influence on the chances of having a live birth, pregnancy or miscarriage. Loading The analysis follows the launch of the Evidence-based IVF website in April, which is led by the University of Melbourne's Dr Sarah Lensen as an effort to better inform people undergoing IVF of the unproven add-ons. 'There are research articles out there on these different add-ons but the quality, broadly speaking, is really poor. Different providers are willing to draw the line in different places in terms of how much evidence they think they need before they're willing to offer or recommend something,' Lensen said. 'Sometimes there's a cost for special IVF conception vitamins or whatever, but they're probably pretty low risk, and they're not as big of a deal. 'Down the other end of the spectrum, there's the super-expensive $1000 treatment options that also come with risks because they're playing with patients' immune systems or injecting things into their ovaries that we don't really know what's going to happen. 'A lot of the add-ons that get offered slip through the cracks in terms of the existing regulatory system.' In Deanna Carr's case, she underwent two normal but unsuccessful cycles of IVF before adding steroids, blood thinners, aspirin and clexane during two further cycles. Determined more had to be done, Carr followed advice from online fertility forums and moved to one of Australia's largest clinics to seek out a specialist known for pushing the envelope. 'There's lots of conversation about which specialists to see, because these specialists are willing to be a lot more experimental – and, when we say experimental, it is literally meaning experimental. 'They're willing to try more add-ons, regardless of how inclined the research is to say that it doesn't work.' Tests at that clinic found Carr had a partial DQ Alpha gene match which may make her body more likely to attack or reject an embryo, though research suggests treatment for it does not significantly improve IVF success rates. To address the issue, a team of specialists gave Carr lymphocyte membrane immunotherapy, in which up to eight vials of blood were taken from her husband so his white blood cells could be extracted and then injected into her arm to correct her immune system with material that is genetically matched to their embryo. 'It's like weird blood brother stuff, and quite expensive,' Carr said. She was given a toxic cocktail of drugs including naltrexone and tacrolimus, which are more commonly used to treat cancer, as well as an intralipid infusion to 'knock out' her immune system. Added together, this cycle cost more than $8000. 'It didn't work. It ended up the same way all our other cycles ended,' she said. Carr's specialists then offered to step up the add-on treatments even further. They proposed a $5000 EMMA and ALICE test which would have seen Carr undergo another full IVF cycle but, rather than try for a pregnancy, the doctors would take a biopsy of her uterus to see if bacteria were present that might be impacting her pregnancies. If it found abnormalities, Carr was then to be prescribed cefalexin – a common antibiotic used for infections and cheaply available on the Pharmaceutical Benefits Scheme. 'It's what the doctor would give you for a sore throat. Why would they make me pay five grand for it? Why not just give me the medication?' Rather than spending $12,000 for another add-on-laden IVF cycle, Carr consulted the Evidence-based IVF site and realised there was little science to support the proposed treatment, then switched clinics to undergo a traditional – and successful – cycle. 'You get persuaded to add on because you obviously want it to work, and you're already spending so much, so this can financially tip you over the edge,' she said. 'A lot of these IVF companies know that. It does feel really unethical [because] a lot of the time people aren't being provided with proper information around the add-ons that are being suggested and the efficacy around them. And people are really desperate, so they'll just keep saying yes to things.' A Macquarie University professor of bioethics in the discipline of philosophy, Wendy Lipworth, last year published a study based on interviews with 31 doctors working in assisted-reproductive technology to see what their 'moral justification' for using add-ons was. The specialists' responses revealed evidence and innovation was not the driving consideration in many instances, and that regulatory reforms to only allow the use of unproven treatments in the context of formal scientific evaluation might be required. Lipworth said add-ons were often marketed as a point of difference between clinics, which may undermine individual doctors' ability not to offer them for patients. As a result, she believes any new regulation would need to focus on the clinics and what they are offering, rather than individual doctors wanting the best for their patients. 'Generally, there should be some expectation that they might at least be beneficial, even if there's no good evidence for it. That's a real balancing act,' Lipworth said. 'In fertility, the balance is going a little too far in the direction of too many things being offered without enough evidence. 'There might be room for some more regulation of how the products are advertised, how patients come to know about them, what they charge for them and so on. But the very act of using them is not in and of itself in any way unethical. 'What really matters is that people know that they're getting treatment for which there is not good evidence, and that they are able to make informed decisions about whether or not to use them. Loading 'That doesn't mean that anything goes and that patients should necessarily be able to walk into a doctor's surgery and say, 'my friend saw this on Facebook', or 'my friend used this and she got pregnant, therefore I want you to offer it to me'. 'There is still a duty of care to offer things that you, at the very, very least, are absolutely certain won't do harm.' Add-ons are not the only factor separating clinics, or the fees they charge. Lensen said premium clinics typically provide continuity of care so patients always get to see the same specialist and nurse, as well as improved customer service, which may not be provided at low-cost or public clinics. And, in many cases, the proliferation of add-on services is often more patient-driven than due to marketing by doctors or their clinics – which is why Lensen believes reforms are even more important, so regulators can step in when doctors fail to uphold their responsibility to dissuade patients from treatments that may not be in their best interests. 'The evidence is not that strong, but the patients are asking for it, or the clinic down the road is offering it, and so they end up using it too. But then when the research community does come out with robust evidence later, I think they do act,' she said. 'So it would be nice if we said from 'now on, no more offering a high dose of corticosteroids to patients. If you want to do that, they can take part in a placebo controlled trial'. 'A lot of the time, though, regulations are not aligned with the commercial interests of whoever they're trying to regulate – that's the whole reason we need them.'
AU Financial Review
16 hours ago
- AU Financial Review
Roundtable must reform the super performance test
Last week, French pharmaceutical company Sanofi announced a deal worth over $1 billion to buy a biotech firm with exclusive rights to a unique vaccine technology developed by Australian scientists. This is great news. The global player will buy into Vicebio, a London-based group, which is developing vaccines for two respiratory viruses using the molecular clamp technology invented by University of Queensland professors Paul Young, Daniel Watterson and Keith Chappell.
