MARK BUTLER, MINISTER FOR HEALTH AND AGEING, MINISTER FOR DISABILITY AND THE NDIS: I'm Mark Butler, the Minister for Health and Ageing, and it's an absolute delight to join the local Member for Melbourne, Sarah Witty, and also the Deputy Prime Minister, Richard Marles, at this terrific event with FightMND. It’s great to be at The Florey, which is the largest brain research institute in Australia, perhaps the largest in the Southern Hemisphere, which I've known for many years to do amazing work in areas like dementia and epilepsy, but also in the area of degenerative disease, things like MS, Huntington's, and also MND.
Motor neurone disease is the most rapidly fatal of all of those neurodegenerative conditions. There are around 2,700 Australians living with MND right now, with two new diagnoses on average every day, and two Australians every day lose their battle with MND. All of those reasons are why Neale describes this condition as The Beast. It truly is a beast of a condition. Although we know what is going on in the human body with MND, the loss of motor neurones, we still don't know why, and there is still so much more to understand about this condition to alleviate that suffering for all of those Australians and people across the world, as well as their families. The average life expectancy of someone with MND is a little over two years, but Neale is really an extraordinary outlier. He was diagnosed back in 2013 and quickly decided, with others, to take the fight up to this condition by forming FightMND, which is so well known particularly in the AFL states but more broadly around Australia now. He's taken up that fight not just for himself but for all Australians, and not just for Australians because FightMND, as we'll hear, has become a truly globally significant player in the global fight against this condition.
As many know, Neale Daniher has only just concluded his time as Australian of the Year. We've been talking through the course of his term of office in that illustrious position with Neale, with Bec, with others from the organisation, about ways in which we as a Government could leverage the huge increase in profile that that office as Australian of the Year has given to Neale himself personally, but more importantly, I'm sure he'd say, to his organisation and the cause of fighting MND. We are determined to make sure that the Australian taxpayer is able to leverage the profile that the Australian of the Year gives to whatever cause has driven them to be awarded that honour, and we've decided to do that in this case as well. I'm delighted to announce that the Australian Government will provide FightMND with $40.1 million to continue the fight against this beast of a condition.
There will be four pillars that will be negotiated with FightMND to ensure that that fund goes to, first of all, increasing clinical trials activity here in Australia. It's already a big part of the work that FightMND does, with about 17 different clinical trials that have already supported about 700 Australians, but we know we can do more, particularly given the globally significant position that FightMND holds. So that's the first pillar.
The second is to increase fundamental research, and that's why a partnership with a terrific institute like The Florey is just so important to this work. We want to increase workforce capability in this area. That is the third pillar. We're also going to engage FightMND to increase our ability to use data not just for its own right but to ensure that we're able to improve diagnostic capability and also therapeutic capability across the country. This is an incredibly exciting development.
I want to thank Neale and Bec and all of the staff at FightMND for coming up with these ideas and patiently sitting down with us in the Albanese Government to ensure that we're able to shape this very significant grant in a way that worked for everyone and I know it is going to deliver terrific outcomes in this battle against MND. We're going to hear from the Deputy Prime Minister and then a couple of experts in this area after we'll hear from obviously Neale Daniher himself. So I'll hand over to Richard now.
RICHARD MARLES, DEPUTY PRIME MINISTER: Thank you, Mark, and it's great to be here with Mark Butler, the Minister for Health, and Sarah Witty, local Member of Melbourne, at the Florey, which does such incredible work, and of course, to be here with Neale Daniher, with Bec Daniher, and with all of those at FightMND. We are enormously proud as a Government to be making this more than $40 million commitment as the next stage of a very significant investment that is being made to FightMND.
At the heart of that has been the incredible work of Neale Daniher himself. As Mark has said, Neale was first diagnosed back in 2013. Through most of my life, I have been following Neale's career as a as a footballer and as a football coach, and as a footy fan myself, have been a great admirer of what he's done, but really, in the last 12 years, I think Neale has made his greatest contribution to our nation. He has completely transformed the way in which MND is understood in this country, but most significantly, he has completely transformed the way in which we are acting and fighting to find a cure for MND. In that period of time, FightMND and the work of Neale Daniher has raised $117 million, which is being invested in this cause. As Mark has said, that is, by global standards, a hugely significant amount of money, which really means that today, Australia was fighting well above its weight in terms of what we are doing to deal with this disease, to meet its challenges, to try and find a cure. That is very much as a result of the efforts of Neale Daniher, as we're about to hear from him.
It is worth saying that as the 2025 Australian of the Year, this was a recognition of Neale which I think was heartfelt across the country in terms of the way in which Australians see Neale Daniher and his work. And that work continues, and we are enormously grateful for everything that he has done, as we are to everyone at FightMND. And with those words, it's my pleasure to introduce Neale Daniher.
NEALE DANIHER, FIGHTMND: Good afternoon. I'd like to begin by thanking the Prime Minister, the Honourable Anthony Albanese, the Deputy Prime Minister, the honourable Richard Marles, the Minister for Health, the Honourable Mark Butler, and the Albanese Federal Government for their commitment to all Australians in the fight against MND. I would also like to extend my thanks to The Florey Institute of Neuroscience and Mental Health for hosting us today.
At FightMND, our vision is simple, a world without MND. Some people might call that a dream. I don't. I don't believe it's impossible. And when you bring focus, funding, and unwavering determination to a problem like MND, change follows. When I was named Australian of the Year in 2025, I asked the community to imagine. Imagine unlocking the mysteries of the neurological frontier right here in Australia. Imagine a future where families don't have to go through what so many are facing now. That’s why this moment matters.
FightMND welcomes the Australian Government's commitment to help establish the Neale Daniher National MND Clinical Network. So it is a powerful step forward in our fight against the beast, a clear signal that the Federal Government is prepared to act to help drive MND research forward, and accelerate discoveries that families urgently need. The science is advancing, the moment is building, and the establishment of the Neale Daniher National MND Clinical Network strengthens the foundations needed to drive real progress, not in isolation but with a shared national purpose. From the very beginning, FightMND was built on a belief in people power. Pat Cunningham, Dr Ian Davis, and I believed that when ordinary Australians come together with purpose, extraordinary things can happen. For more than a decade, Australians have stood shoulder-to-shoulder in this fight. It has seen what unity, generosity, and persistence can achieve when we refuse to look away.
And this investment isn't for my benefit. It's about laying foundations so others don't have to face what I have, and so families can hold on to something practical. Time, answers, and genuine hope. Big change doesn't come from one moment or one decision. It comes from people pulling in the same direction, step by step, year by year. This commitment strengthens our resolve, builds moment, and reminds families they're not alone. MND is complex. There's no single solution. This funding and the Neale Daniher National MND Clinical Network are a critical piece of the puzzle, but the fight continues. That's why the FightMND army remains essential. Together, government, researchers, clinicians, and community, we keep pushing forward. We keep landing blows against the beast. Together, we play on. Thank you.
BEC SHEEAN, FIGHTMND: Good afternoon, everyone. My name is Bec Sheean. I'm the director of research and programs at FightMND. I am so excited to be here today to talk about the incredible investment for the Neale Daniher National MND Clinical Network. Firstly, on behalf of the team at FightMND, the MND research community, and the lived experience community, we extend our sincere thanks to the Prime Minister, the Honourable Anthony Albanese, Deputy Prime Minister, the Honourable Richard Marles, and the Minister for Health, the Honourable Mark Butler, and the Australian Government for their continued commitment to fighting the beast that is MND.
Today is such an exciting day for MND research in Australia. It marks the start of a huge program of work to uplift Australia's clinical research ecosystem and workforce. The Neale Daniher National MND Clinical Network will deliver a nationally integrated and sustainable clinical trial network for MND. The network will transform how MND is diagnosed, how it is researched and treated in Australia, and it’s continuing to cement Australia as a world class centre in the fight for a cure.
The Neale Daniher National MND Clinical Network comprises of four pillars that underpin a cutting edge program. Firstly, investment in a world-leading, nationally integrated MND clinical trial network improving efficiency, opening up opportunities for large multi-centered clinical trials and innovative trial design. This will build on an already growing interest in Australia for international pharmaceutical companies and bring more cutting edge trials to Australia and to Australian patients. The funding will support the establishment of new sites in areas of high need, improving equity of access to MND clinical trials and research, and address the barriers for participation in trials including those of geographic and cultural barriers.
Secondly, to address challenges in poor integrated data or gaps in our critical data, funding for the pillar of this program will enable FightMND to develop a national MND data strategy, the effective and efficient collection and appropriate use of patient data. This will support clinical decision-making and research. Part of this pillar will be the delivery of a national incidence and prevalence study and environmental risk study to address significant data gaps in the understanding of people with MND in Australia and the environment in which they live.
And of course, a world-class clinical network needs world-class clinicians, researchers and health professionals. So, the third pillar of this program will support capacity and capability building in the MND clinical workforce through a national PhD scholarship and fellowship program specifically for MND clinicians, researchers, includes our doctors, our nurses and our allied health professionals. This program will ensure a sustainable national skilled workforce including in areas of high need, increasing equity of access to best practice care for all Australians living with MND.
Lastly, the fourth pillar of this program will support research into best practice care, including addressing gaps in evidence and investigating models of care specific for our Australian context and our unique geography and healthcare systems. The Neale Daniher National MND Clinical Network is a huge string in Australia's hope in the fight against MND. It is a game changer for the way that clinicians diagnose and provide treatment and care for those families who are affected by the disease. It uplifts our clinical system to align and exceed international world-leading MND networks, cementing us not only as a key contributor to global research but leaders driving strategic direction and progressive research. While this is an incredibly important string in our bow as Neale has said, fighting MND will continue to maximise our fundraising efforts to support innovative research into understanding the causes of this disease and developing treatments and helping to progress these through to the clinic for Australians living with MND.
Looking back over the last 10 years, it's incredible to see the impact that Neale Daniher has had on MND research in Australia and around the world. It's also exciting to look back over the last 10 years and see just how much progress has been made in the last 10 years. But looking forward, today's announcement of funding and the establishment of The Neale Daniher National MND Clinical Network will be a huge milestone in our fight against MND. We are incredibly grateful for the partnership with the Federal Government and excited about the impact of this cutting-edge program for all Australians living with MND now and into the future.
THANUJA DARMADASA, NEUROLOGIST, ROYAL MELBOURNE HOSPITAL: Thank you very much. I am a neurologist at the Royal Melbourne Hospital and a clinician researcher here at the Florey Institute. Firstly, I'd also like to thank the Federal Government for this four-year commitment of $40.1 million. And I'd also like to thank the momentous and relentless drive of Neale Daniher and the FightMND team to really establish this Neale Daniher MND Clinical Network.
As a neurologist, I see patients with MND every week and we know that this is a really complex problem. It's a compelling problem. It affects people at the prime of their lives, and we're not going to have one solution to fully tackle this. We know also that what we do best is working together. This funding essentially allows us to leverage our singular efforts to really try and unify that in a national coordinated and comprehensive movement that will inevitably accelerate our discoveries, but also really allows to have the best standards of clinical care here in Australia and elevate Australia as a global leader in this field. The funding across our four pillars will establish Australia as a core destination for MND clinical trials globally, but also it really looks to the local barriers that we have uniquely as Australians, our remote, our regional and our rural communities and our First Nations people who can access equity of care. It allows us to unify our research and our clinical databases so that we can really coordinate our research efforts together. And I'm particularly excited about the dedicated funding for clinician researchers and the research fellowships that this will bring that not only will allow us to grow and establish our dedicated workforce for this and the best and most talented people we can find, but it allows us to make sure that we have ongoing and concerted efforts to establish MND research into the future for Australia.
We know that this funding will really galvanise our MND community and our research efforts, and we're very, very thankful for this funding and also this great investment that we have into MND research. We're really, really excited to see what the opportunities that this will bring for the next four years for the MND clinical research community. So, thank you very much.
MARLES: We might take questions on the announcement, and then if there are questions for the day, I’ll take them.
JOURNALIST: Can I ask the Minister, why did this entice international pharmaceutical companies to invest in trials in Australia?
BUTLER: Well, I might ask Bec to answer that in particular, but we know that we all already have a very high level of clinical trials and activity, and that very significant part is due to the work that FightMND has been doing for over a decade now. We also know that clinical trials are an incredibly important way not only to learn about a condition like this, but to provide best practice care for people living MND.
JOURNALIST: Why do you think this will mean that international pharmaceutical companies will be more likely to initiate trials in Australia?
SHEEAN: I think what we've already seen with the increasing trial activity in Australia thanks to the support of the Federal Government and the work of FightMND, we've seen a big increase already in interest from international pharma to come to Australia to run trials. What the network will do is it provides active sites, so lots of patients that are readily available to be recruited into trials. It provides the workforce of experienced clinicians who have experience running clinical trials, and looking at the data strategy is about potentially developing a data bank that underpins that so that when industry come here, they know about the patient population, they know where patients are and they can really rapidly and effectively and efficiently roll out their trials.
JOURNALIST: You've spoken about the amazing work that's being done right around the country. Will this ensure that every little bit of information that's being found in individual spots is joined together and therefore no duplication when looking at new parts all the time?
SHEEAN: Absolutely. The network is about working more effectively and efficiently together, not duplicating efforts. We know that there's really great studies going on at different sites and a lot of those data sets are siloed. This is about how can we first look at where is the biggest need for additional sites or additional research, and what data do we already have and then what data do we not have and then going about that in a really strategic coordinated fashion.
JOURNALIST: Given that's the case, how quickly do you think very real change and very real advancement will come from this?
SHEEAN: When you look at the program, there's some pillars of the work that could really start straight away. We know there's a desperate need for an increase in the clinicians, people like Thanuja, and that's something that we can really roll out and start to deliver straight away. Some of the other pieces of work like increasing the clinical trial sites and collecting data, there's probably a couple of years of work of really understanding firstly delivering things like the national incidence study – so where are people with MND in Australia, where are the areas where there's higher incidence – and then how do we adapt to that by developing sites in those areas of need. That will take time, but the aim is that as we get towards the end of the four years of the project, we really understand what the Australian landscape looks like and we have the infrastructure and sites there to support that.
JOURNALIST: Is it a problem at the moment that many people in regional areas simply can't participate in trials because they are in a regional area?
SHEEAN: When you look at where trials are more regularly are active, they're usually in the city centres. Also, more often they're on the east coast of Australia because that's where the experienced clinical trial sites are. The work that we've been doing over the last 10 years is about trying to incorporate sites in other regions of Australia as well. But without that critical infrastructure, the sites just don't have the resources, they don't have the experienced clinicians to be able to do that. What this program hopes to do is not necessarily set up big MND research clinical sites in regional and remote areas, but to set up satellite sites or other types of sites that can feed into those big city centres so that people in regional and remote areas will be able to participate not just in trials, but also in research.
JOURNALIST: How important is it that the effort is divided between cause and cure, and how do you balance those two things?
SHEEAN: The investigation into the cause of MND and providing patients access with participation in trials, both of them are really equally important. What we know of MND is it's an incredibly complex disease, and it's also very heterogeneous, so that if you’ve met one person with MND, you've met one person with MND. What we really need to do is understand the fundamentals of the disease and how that varies from different patients because at the moment with bringing a big group of patients into a trial, what we're finding is that a lot of drugs are then failing through the clinical process. By understanding the fundamental causes of the disease, we're going to develop a better treatment that's targeted to that cause and better outcomes for patients in trials.
JOURNALIST: And is this a perfect legacy of Neale's year as Australians of the Year? The Minister was talking about leveraging that year. Is this exactly what you want?
SHEEAN: This is exactly how we wanted to leverage Neale's legacy from Australian of the Year. This program is not something that was thought up overnight when Neale was awarded Australian of the Year, it’s something that we’ve been working with the sector to develop over the last ten years. And when Neale was awarded Australian of the Year, lots of ideas about important research that needs to be done, but we felt like this is the best way to really continue that legacy of Neale. Because one of the biggest impacts that Neale has been able to have is give Australian patients access to trials. Ten years ago, if you were diagnosed with MND, you did not have an opportunity to participate in a clinical trial and you often didn't have any opportunity to participate in research, and it has fundamentally changed the landscape of clinical trials for Australians. This is a really fantastic way to continue that legacy, not just keeping doing the work that we're doing but to expand that and grow that as well.
JOURNALIST: And Bec, you have to sell a lot of beans to make $40 million but you guys do it. You've made $117 million, I think, over the- since the inception of FightMND. How important is it that this gives you the leg up and gives you capacity to do a lot more work, but also you've got them either side of you that it keeps on going, beyond this $40 million?
SHEEAN: Absolutely. $40 million would be a lot of fees, and it just wouldn't be possible for us fund a program of this scale. The field has a lot of ideas around the work that needs to be done. This is a big priority area for us and it just wouldn't be possible without this big investment. But the work, that fight and the Australian community does to support us - buying beanies and donating every year - is helping that early fundamental research. It's also helping push those drugs through the drug development pipe and into the clinic so that we're able to provide access to trials for Australians with MND.
JOURNALIST: Amazing. Thank you so much.
MARLES: Questions of the day?
JOURNALIST: Can I just ask you about interest rates? There's widely expected that we are going to get an increase next Tuesday. Is Government spending any contribution to that?
MARLES: What we've seen in the inflation numbers is obviously a number that is larger than we would want. There are a number of factors behind that, the Treasurer is going into them. But what is really important to understand is that the focus of this Government, since we came to office back in May of 2022, has been around addressing the cost of living. We know that inflation is at the heart of the challenges associated with the cost of living. We will meet this challenge with action as we have from day one. Even this month, we've seen PBS scripts capped at $25 per script, that's the lowest they’ve been since 2004. That's just one example of a measure that we have taken to deal with the cost of living and that's what we will continue to do. Tax cuts, looking at energy bill relief, all of those measures is what we've been doing since we've come to power, and that's what we will continue to do as we will to prudently manage the budget. And again, if you look at how we have done that since coming to power, we've turned Liberal deficits into Labor surpluses.
JOURNALIST: Can you confirm what federal support is being offered to WA police to investigate the alleged throwing of a bomb in Perth?
BUTLER: We work with the police forces around the country in respect of issues such as these.
JOURNALIST: Labor frontbencher Anne Aly has declined to endorse the Israeli President's upcoming visit to Australia. The Prime Minister invited President Herzog to Australia, what do you say to the members of your caucus who are uncomfortable with his visit?
MARLES: President Herzog has been invited to Australia by the Governor General and the Prime Minister and he is an honoured and welcomed guest to Australia. he will be treated with all the dignity and the hospitality which is due to him. It's an important visit in the context of the bilateral relationship between Australia and Israel. But in the aftermath of the Bondi massacre, it is a particularly significant visit for Australia's Jewish community, to have the Israeli Head of State and President coming to our country. this is a really important visit. He is a guest of the country, but he's been invited by the Governor-General and by the Prime Minister, and he is very welcome.
In relation to Darwin, we were saying from the perspective of Labor from the get-go that we believe that the Port of Darwin should have remained in Australian hands, and since coming to Government we as a Government have sought to bring the Port of Darwin back into Australian hands. There are commercial negotiations going on right now in respect to that. So, there’s nothing I can say further in the detail for now. But clearly, it's very much within the right of the Government to pursue the course that we are as a Government. Now, in respect of our relationship with China. It is a relationship where we want to have the most productive relationship that we can have with China. We've worked hard to stabilise that relationship, again, since coming to power back in May of 2022. The economic relationship between our two countries is very significant for both of us.
JOURNALIST: Why is the sale taking so long?
MARLES: It's a complex matter and there are commercial negotiations going on in relation to that and I really can't go into that in any more detail other than to reiterate what I've just said, and that is that it is very much the desire of our Government to see the Port of Darwin returned to Australian hands.
JOURNALIST: Given the incident in Perth is being investigated as a potential terrorist act, is the government aware of any threats to other demonstrations?
MARLES: We work closely with the West Australian Police in relation to this matter. We wouldn't go into answering a question of that kind in terms of the intelligence that we have in relation to events such as that. But we work very closely, we always have. And obviously we particularly have in the aftermath of what occurred on 14 December in Bondi. But we work very closely between the federal agencies and state police forces to ensure the safety of the Australian people.
JOURNALIST: Do future protests advocating for the rights of Indigenous Australians need enhanced security?
MARLES: There is an assessment in relation to every protest around the security measures which should in place. There is a high degree of coordination which occurs between federal authorities and state police forces in respect of that. Now, we trust the judgment of the professionals in relation to this. Whatever is required is provided in terms of resources, and that's very much been the case. Those assessments will continue to be made by the relevant authorities and we will make sure that there is the appropriate coordination between state and federal agencies in respect of maintaining that security.
JOURNALIST: Minister Butler, a matter on health. The Nipah virus outbreak in India, is the Government concerned about that and what measures are you taking to make sure Australians are safe?
BUTLER: Like other countries, we’re monitoring the recent outbreak of the Nipah virus in West Bengal province of India, with at least a couple of confirmed human cases. We're monitoring it very closely. We're engaging with other authorities internationally, including the World Health Organization. We’ll be putting up some further advice on the CDC.gov.au website, the website on the new centre for disease. Any travellers thinking of traveling to India are advised to monitor the smart travel website for further advice.
JOURNALIST: And how serious is the Nipah virus?
BUTLER: It's a very serious virus. It's relatively rare, but its mortality rate is very high for a respiratory virus. Obviously, all countries are monitoring this reported outbreak very closely, and any advice we receive from authorities we’ll follow very seriously.
JOURNALIST: On public hospitals, have you put a new or revised offer on the table to the states? And are you confident that this will get the states over the line?
BUTLER: A revised offer was provided to states and territories from the Prime Minister just before Christmas, a very significant offer amounting to around $23 billion on top of what they would have received under the old Scott Morrison agreement. That would have provided them with an increase of about $12 billion over the course of 5 years. We pretty much tripled that already with our offer. They would be receiving an additional 23 on top of that $12 billion. As you all know, there's a National Cabinet meeting due to take place tomorrow morning and a dinner tonight. There obviously are going to be negotiations between jurisdictions about that, we're very confident in the offer we've put on the table which is a generous one. It's a significant offer in terms of the operation of our public hospital system, but it's also a significant offer to cooperate between all jurisdictions in the work we need to do to get the NDIS on track and put in place the Thriving Kids Program for children under the age of nine.
JOURNALIST: Will the Thriving Kids Program be delayed?
BUTLER: The states have certainly put positions back to us about the timeframe that I announced at the Press club last year about the rollout of the Thriving Kids Initiative. This is obviously something we need to do and want to do in partnership with jurisdictions. Any feedback from states and territories we obviously take seriously, but that will be a matter of negotiation over the coming 12 or 18 hours.
JOURNALIST: Has a delay always been inevitable, given that you did have these warnings from the states that the timelines were too ambitious?
BUTLER: No, I'm not going to give it that language. This is a program we're going to deliver in partnership with states and territories. What we did as a Commonwealth last year was to try to inject some urgency to a commitment that were made back in 2023 by governments, but, which frankly, has drifted. We think there's been really productive negotiations and discussions between states, territories, and the Commonwealth. There's been an advisory group set up that I co-chaired with Frank Oberklaid, a very well-known paediatrician from here in Melbourne, a range of other important representatives, an inquiry by the relevant committee of the Commonwealth Parliament who delivered this report in the last couple of weeks. There's been a huge amount of work over the last 6 months or so, and I'm very confident we'll reach an important landing on Thriving Kids, as well as the other elements of the deal that we hope will be finalised by National Cabinet tomorrow morning.
JOURNALIST: If tomorrow doesn't result in a deal, has time run out or will the interim one-year funding roll over?
BUTLER: I've said very honestly and clearly I think that the runway is getting shorter for a 5-year deal to be negotiated this side on 30 June. South Australia goes into caretaker on 21 February, and it will be very difficult to engage in any negotiations while that election is taking place and come back to negotiations essentially in April would leave a very short time frame to get any new funding arrangements in place for the hospital system by 1 July. I think all jurisdictions understand that we're up against it. They understand it's in everyone's interest, most importantly the interest of patients, NDIS participants, parents, and the really hardworking doctors, nurses and other staff who work in our public health and disability system to get this deal done, which has been the subject of a lot of negotiation. It's a very complex deal. It's not just about hospital funding. It's about a range of other things as well across the social care system. But there's a lot of goodwill I pick up among all jurisdictions to get this deal done. There'll be negotiation about the finer detail, but there's a strong level of commitment to get this done and a recognition that really needs to be done now.
JOURNALIST: But if it isn't, will the interim one-year funding roll over?
BUTLER: We're not crossing that bridge yet because we haven't cut to it. There would be a range of things we would all have to look at if we're not able to strike a five-year agreement, which is everyone's ultimate desire. We have to look at options like a one-year roll over, which I don't think anyone wants.