Jane: Hi everybody, we have another podcast with some massive brains with us today. Good morning, brains. We have Amanda Dr. Amanda Wright, who's an honorary senior research fellow at Macquarie Uni's MND Research Centre. And she's also at Charles Charles Sturt Uni of Rural Medicine. Good morning, Dr. Amanda Wright. I'm
Amanda Wright: Good morning, Jane. How are you?
Jane: very well. And then we have Dr. Lindell Hendon. She's a postdoctoral, I can't never say that word. Research Fellow and Senior Lecturer at the Advanced Gene Discovery Team within the Mulcora Uni MD Research Centre. I met these two again at the MND conference recently, and they're extremely excited because they just had some amazing research published. So I asked them if they would come on and discuss it with us. And they've obviously said yes because they've both turned up. So, but before we get into the research, we like to know who you are, not what you do. So, Amanda, who are you?
Amanda Wright: So I'm Doctor Amanda Wright. you wanna talk a little bit about my background?
Jane: I want to talk about who you are as a human being. Hm.
Amanda Wright: okay. Well, I am a mother to two beautiful children, Millicent age nine and Harriet age seven. Shout out to them because they'll be very excited to hear that.
Jane: Shout out to you two.
Amanda Wright: and I live in Orange in Western New South Wales. I have just finished medical school as of two days ago.
Jane: Yay.
Amanda Wright: and my background was in I used to work in the motor neuron disease centre as a postdoctoral fellow there. I decided to pursue medicine. So this is where all of my career paths have come together here.
Jane: so we were just talking before we started recording, you've been studying for fourteen years. But
Amanda Wright: Mm.
Jane: you've also been studying whilst you've been a mama. I mean, that's phenomenal. Yeah, don't don't negate that. That's amazing.
Amanda Wright: Yes. Yeah. Yes. I'd also put a clause on that that I have a very supportive partner who has helped me through that entire process. Shout out Shout out to Tom.
Jane: Okay, you we really need shout out there too. Yeah, Tom, shout out. Thank you.
Lyndal Henden: Yeah.
Jane: Lindell, who are you?
Lyndal Henden: Hi, yes, so my name is Dr. Lindell Hendon. So I am I'm from New Zealand, been in Australia for I think 12 years now. and my background is mathematics and statistics. And so I try to apply it to medical data sets to try and figure out what's going on with different diseases. And I've been working on motor neuron disease now for just over eight years. mainly on gene discoveries, but branching out into more clinical research as well. And I will just say that as Amanda, I'm just gonna toot your horn a little bit more here, everything that she has done so far is just through passion. It is she doesn't get paid for any of this. She's been a student the whole time and yet passion and dedication. So Amanda, you deserve a big congratulations here.
Amanda Wright: Thank you, Lindell.
Jane: You really do. It's phenomenal what you have done to this point. And it's only to this point. You're just a baby. my God.
Lyndal Henden: Hmm.
Amanda Wright: Ha ha
Jane: Okay, so tell us about the research that you had published last week. You did a a presentation at the N D A conference. It's
Amanda Wright: Yeah, so the research that we showed was that in Western New South Wales local health district, so this is quite a large health district and the way that you know our health, which I probably wasn't aware of when I start before I started medicine that how you know health works within these local health districts. So this one is the largest in New South Wales. It goes all the way from Bathurst in the southeast corner up to Cobar and up to Wolga and all the way up to the border. So it it it's a huge area that's covered here. So it's it's equivalent to the size of Germany, the the health district itself.
Jane: Do you know what the population is of that area?
Amanda Wright: Yeah, it's almost three hundred thousand. I think about two hundred two hundred and eighty to three hundred thousand. So
Jane: Okay. Okay. Yep.
Amanda Wright: and it hasn't changed very much over the last census, but hopefully we'll see what the new population is in the next census data as well, which Lyndall and I being mathematic nerds are really excited to see. So
Jane: Ha ha ha.
Lyndal Henden: Ha
Amanda Wright: so and then what what the research has shown that we have Incidence, which is the number of new cases being diagnosed of MND per year, was approximately four per hundred thousand. so essentially double what the Australian statistic was thought to be, Australia-wide, and also four times that the rate of what the global incidence is is.
Jane: Four times.
Amanda Wright: Four times
Lyndal Henden: Mm.
Amanda Wright: the incidence rate. Yeah, so that's the number of new diagnoses. And then what we also showed was that prevalence, that's the total number of people living with the disease, that was sitting at about eight per 100,000. But that that statistic is equivalent to what was expected from the Australian the Australian estimates, which is not a great statistic because what we're showing is we've got a lot of people being diagnosed and then they're not living very long.
Jane: So what I read from that research is that a majority of these people are being diagnosed with bulbar onset.
Lyndal Henden: Correct.
Amanda Wright: Yeah, that's correct. Do you want to speak to that, Lindell?
Lyndal Henden: Mm, yeah, so I found this result quite surprising. So usually there's between I would say between twenty five to thirty-five percent of people with motor neuron disease have bulbar onset, motor neuron disease. And we had I believe around forty percent of our of people in this study had had bulbur. But what was quite surprising was This number in females. So again, it's around that twenty-five to thirty-five percent. But in females, we had sixty percent of our females had Yes. Yeah,
Jane: it was sixty. Lord.
Amanda Wright: females with boba, yeah.
Lyndal Henden: females with bulb or onset motor neuron disease. So that result because I I look at a lot of different I look at data sets and and clinical data, and this is just a number that I will generate for every data set that I get given with people with motor neuron disease. And I always see it sitting around that twenty five to thirty thirty five percent and that's what's commonly reported in the literature. So when I saw sixty percent, I was quite surprised by that. It's like a flip of what we would traditionally see. And we do have more females, a higher number of females with motor neural disease in in this study than than what we would usually see as well.
Jane: Was it fifty one percent?
Lyndal Henden: Correct.
Jane: So what is it norm normally from a data perspective?
Lyndal Henden: So you Yeah, so usually so motor neuron disease has a sex bias and there's usually more males affected than females. usually sixty percent males, forty percent female. when we have a look at data sets with the genetic form of motor neuron disease, we tend to see a more fifty fifty split of males and females. but even then we don't usually see this bulbed predominance phenomenon.
Jane: Okay, I'm gonna ask you a terrible question. Why? Why this predominance of bulba?
Lyndal Henden: Yes, I think
Jane: I'm
Lyndal Henden: why is the million dollar question indeed for yes,
Jane: It's the billion dollar question actually.
Lyndal Henden: why why we have a higher burden of motor neuron disease and why we have a higher burden of bulb onset motor neuron disease right now we don't know and that is something that we are really trying to understand. But we c we can't even say right now what's going on.
Jane: How are you trying to understand?
Lyndal Henden: We are applying for money to
Amanda Wright: Mm-hmm.
Jane: Ha ha
Lyndal Henden: I would say everything probably starts there. What sorry amandt I have just submitted this morning funding an application for funding. So the study doesn't stop here. We are going to continue to monitor this health district in the years to come. And what we'd like to do is to start collecting biospecimens from these individuals. The first thing and this is what I would say is the low-hanging fruit is to look at genes. So because we have a more 50-50 male to female split, which we see in our genetic cohorts, we would like to see if if G a genes genes might explain this phenomenon or families might explain this phenomenon as
Jane: Inspirotic as well.
Lyndal Henden: Well, at this stage we don't actually know who in this cohort is familial and who is sporadic. Sandage,
Jane: really?
Lyndal Henden: do you want to speak to that?
Amanda Wright: Yeah, so I guess it kind of comes down to the way that the data was collected. So the way that all this was collected was through a bunch of different ways that and D patients would access health care in the region. So that's through going through neurology reports, through hospital records, and through like palliative care records. So I tried to sort of get any way that anyone would access health. and then troll through those records and and in the end that that resulted in going through like paper records in the bottom of a New South Wales Health
Jane: for the love of God.
Amanda Wright: system. So so the record is quite fragmented and this is why the notifiability has become so important. And you know we're we're very proud that we got to put this data together, but but it it took a lot to get it to to that point. So in saying that to get records on people's genetics is difficult as it is with that's the way we were collecting the data. But but we did also notice in so we're looking through like neurology records. So some patients are sent for genetic screening, but not all of them. And I think what we found in the end is that we only had records for that on seven,
Lyndal Henden: Seven.
Amanda Wright: seven of the 51 patients, which means we we think that. Majority of these patients have not been genetically screened. and and and it comes down to isolation as well. So, you know, some of these patients are traveling 10 hours to see a neurologist, they don't do that very often, it's just near impossible. So, so we have an underrepresentation of the genetics. So that's what what we aim to do next, and our first port of call is to make sure that everybody is genetically. screened, which obviously is extremely important. and it's something that Lyndall and her team at Macquarie, our team at Macquarie do exceptionally well. and I can let Lyndall speak to her new study, but it shows that that that's something that we can do is to see if these people are linked in in families, and then to rule in or rule out a genetic cause for our high case load and our interesting demographics that we're seeing.
Jane: Okay. It's two thousand and twenty six and you had to trawl through paper records to gather this information.
Lyndal Henden: Mm-hmm.
Amanda Wright: yeah, but also yeah so we did have to trawl through paper, some some paper records to collect for for everybody. I will say that there are the community care teams have been keeping amazing records as well from 2023. But again, to make sure that everybody has been accounted for, we've had to, yeah, that has involved paper records as well.
Jane: Let's just talk for a minute before we talk about what Lyndol's going to talk about is the announcement about the notifiable disease register in New South Wales. So, in the perfect world, what will happen is that every time someone in New South Wales is diagnosed with MND via their neurologist or their GP or wherever they're diagnosed, that health professional will have to enter. that diagnosis online that goes back to the health department, yeah? Like
Amanda Wright: Mm-hmm.
Jane: we do with monkey pox for the love of God now.
Lyndal Henden: Mm-hmm.
Amanda Wright: Mm-hmm.
Jane: When do you think this is gonna start?
Lyndal Henden: I believe it should have started on the first of September. and I think I think it's it's really great that we've gotten this far. until that data is sitting on my desk, it probably hasn't gone far enough.
Jane: Correct.
Lyndal Henden: I would you need the people who are passionate. and invest it to be looking at this as well. So I mean, yeah, it it's it's new and I and I assume the it the how the government does this, it still needs to be set up. so there may be some time before data starts to come in and it's collected and it's available. I'm not sure how we go about accessing any of this information at this stage. So in that time we are going to just continue to do what Amanda's been doing. and just collect data how we've been doing it. But it would be the most amazing thing if we didn't have to do that. And we could just get
Jane: yeah.
Lyndal Henden: it. Mm.
Jane: And also if we could get this set up properly through the health department in New South Wales, maybe they could aim for best practice and then we could roll roll that out Australia wide and then we could roll it out globally, you know, and what an amazing thing that would be.
Lyndal Henden: Absolutely, that would be the dream.
Amanda Wright: Yeah, and that's right. And that's and that's something that Lindell and I have really started to gain passion for is taking those results and then turning them into something that's tangible research for patients as as well. So you know, at the moment what we've done here in Western New South Wales LHD is essentially that, is essentially notifiability. We've counted the numbers. But what we want to see it happen is switch to you know finding genes, finding environmental causes. So we're not just counting numbers, we're actually taking those and turning them into outcomes. So I think that's what what we're really aiming to do here is to to t start to take biospecimens from patients so that we can get a I mean my biggest passion is to get indication of what's happening in rural patients because at the moment
Jane: Yeah.
Amanda Wright: they've been underrepresented in the research. and if we think it's an environmental cause, we need to be studying the people who are
Lyndal Henden: Mm, mm-hmm.
Amanda Wright: close to environmental aspects.
Jane: I think I said to you last week, Amanda, that on the Let's Talk N D podcast page, I I think we have twelve hundred people on there and I put a call out for people who thought they lived in areas where there are clusters and the and and I have had a lot of responses
Amanda Wright: Mm.
Jane: from people who live in rural regional areas. I think I was talking to you about around the double area and there's a neurology team who when they come in they're visiting twenty patients at home.
Amanda Wright: Mm.
Jane: in that
Amanda Wright: Yeah.
Jane: area. That's a massive amount of people in one in one area.
Lyndal Henden: Mm.
Amanda Wright: It is a massive and those people have been counted in this study as yeah.
Jane: Yeah, in your study as well. So the implications of having 51 people in the Western Health District at the moment, besides the fact that these people have MND, is that if we are not up until this point aware of how many people there are, how are we providing adequ adequate care to these people who have MND?
Amanda Wright: Hmm. Yeah, that's right. And and we do have I I I'm not entirely sure of the complete history, but between palliative care and the neurodegenerative community care team, they were set up for this reason. and they we have a fantastic community care team, but they are small in number servicing a large area. and it's it's difficult for patients to, you know, commute. So th our community care team have to commute to patients all over that health district, you know. And again,
Jane: Yeah.
Amanda Wright: you wouldn't expect someone in Germany to travel from one end of the country to the other, but that's what we have to do here, just for people to be able to access the the correct amount of care.
Jane: So I think you said in the article that I read people were travelling on average have one hundred and seventy Ks to go and see their neurologist, but many more are travelling far more than that. One hundred and forty, okay.
Amanda Wright: Yeah, that's right. Yeah, 140 kilometers was the average. Up to 700 kilometers, just and that's just to see a neurologist, yeah. So some some patients will come to our local neurologists. sometimes our local neurologists will will refer on to specialist care for and D in Sydney. so you know that's another another commute. So often the the patients will be traveling to one neurologist to the next. And then that's just, you know, the tip of the iceberg as to what what they have to go through in a in a regional area.
Jane: Well yeah, so what about Allied health and equipment, all of that stuff? I mean how
Amanda Wright: Yeah, so our community care team do all that but they but they have to they have to commute too to these patients.
Jane: Yeah.
Amanda Wright: So it's it it's difficult to to access
Jane: It's more than yeah, it's more than difficult. And I mean they're doing an amazing job. I'm not diminishing anybody, but all I'm saying is that okay, so the prevalence is far higher. So therefore the resources that we require are far h far higher than we thought. Yeah. Lin
Amanda Wright: Exactly. Yeah, that's correct. Yeah.
Lyndal Henden: Mm-hmm. Yeah.
Jane: Lindel, jump in. What do you want to say?
Lyndal Henden: Yeah, well I guess given that what thirty percent about thirty percent of Australians live rurally or remote, but only four percent of the neurology workforce is rural or remote and this is we're facing an aging population and people who live rurally tend to be older. So you would hope that in future there's there's more access to what these individuals are gonna need. And this is also sort of trying to raise awareness of that.
Jane: Yeah, so it requires planning on behalf of the government, obviously.
Lyndal Henden: Mm-hmm.
Amanda Wright: Absolutely.
Jane: and we need to make it more inviting, interesting for doctors to go rurally as well.
Amanda Wright: Well we do. and I think like my my university Charleston School of Rural Medicine have done an incredible job of training all of so they only take up to this stage they only take rural students, r people from a rural background, and train them in a rural location. What the issue is though is that we don't have the specialist training rurally. So for me who wants to do desperately wants to do neurology. lived here, raised my family here, I can't do neurology training here. I have to go back to Sydney. So or or to a or a major metropolitan area. So we don't have the training pathways for the for specialist neurologists to train. And then this cycle perpetuates that cycle of only having four percent. I think that equates to thirty neurologists that live outside of a major metropolitan area across Australia.
Jane: thirty.
Amanda Wright: Yeah, four percent of the workforce, yeah.
Jane: Okay.
Amanda Wright: Sorry to dump
Lyndal Henden: Yeah.
Amanda Wright: all that on you, Jane. Yeah,
Jane: Yes. And yeah, I didn't realise it was only thirty.
Amanda Wright: yeah.
Jane: just as an aside, so you are gonna go back to university at some point and be study to become a neurologist?
Amanda Wright: No, I once I finish medical school, then then you start your training after medical school you start the training pathway to be a neurologist. So that's another eight years from my point now.
Lyndal Henden: I know.
Jane: That'll be twenty four, twenty five years that you'll be studying.
Amanda Wright: Yeah, I try not to think about it like that. Yeah, pretty much.
Jane: We'll be going to your kids' weddings at the same time you graduate, yeah. What do you two think is a solution to the problem? let's not talk about MND course for the minute. Let's talk about how do we get more specialists into rural and regional areas.
Amanda Wright: How do we get more specialists? Yeah.
Jane: Lindell, don't sigh like that. That just sounds defeatist.
Lyndal Henden: Just I am thinking that's a big question. Yeah.
Jane: It's a really big question, but you've got big brains, so
Amanda Wright: We train we train more doctors rurally and we set up the training pathways for s start to end training in a rural area.
Jane: To brilliant and you know, rural areas need that too, you know. It will benefit
Amanda Wright: Yeah, exactly, yeah.
Jane: the economy as a whole, not just for healthcare.
Amanda Wright: Yeah, that's right. So I mean that there's that and then and then in terms of and D, what we need to do is start to set up specialised care like we have at Macquarie Uni outside of a metropolitan area. If we could if we can recreate the equivalent clinics that have a travel component to them, where they travel and not the patients traveling, I think that would be my ideal level of care.
Lyndal Henden: Mm.
Jane: How many do you think we would need of those in New South Wales?
Amanda Wright: Every health district, every
Lyndal Henden: Yes.
Amanda Wright: local health district would need to have their own.
Jane: Okay. Lindo?
Lyndal Henden: I would agree. Every house well, I guess some health districts have more people, so you'd need more than just yeah,
Amanda Wright: Mm.
Lyndal Henden: more than that. yeah, it's a big task. People need a lot of care and a lot of variety in the care that they need. So yeah,
Jane: Yeah.
Lyndal Henden: I and I know that as people progress, just leaving the house is hard. So I truly believe that peop like home visits and taking like unburdening a situation that's already really difficult is the way to go. That would be I'd love to see that in the future.
Jane: Well, for the person with and D, but also for their carer. So if we're talking
Lyndal Henden: Yes, absolutely.
Jane: about is just referring to what you said before, because we're in rural areas, the incidence of over sixty-five is higher. If we don't if we're over sixty-five, then we're on aged care, then we don't have access, blah, blah, blah, blah. And also if you are in your seventies, I mean it's hard enough when I was in my whatever I was, caring for Robert. And but if you're in your seventies and eighties and you're caring for a person with and D, getting them out of the chair is hard enough, let alone getting them out of the house. So
Amanda Wright: Hmm. Yeah.
Lyndal Henden: Hmm. Hmm.
Jane: this form of care that you're talking about is actually imperative. Number one, to provide better care for the person with and D, because they are suffering rural and regionally at the moment. And also we can't discount the carer burden as well, because it's huge.
Lyndal Henden: Yes, absolutely. Yeah.
Jane: So for the two of them, yeah.
Lyndal Henden: Yeah. It's a
Jane: Okay.
Lyndal Henden: big picture.
Jane: It's a big picture. And the first question I asked you both, the answer was money. And you know what? The answer to this question is also money.
Amanda Wright: Yeah.
Jane: But in twenty twenty five we spent five billion dollars as an economy on and D.
Amanda Wright: Mm.
Jane: That's just in this country.
Amanda Wright: Yeah, that's right.
Jane: That money has to be able to be spent better and smarter and in a more targeted manner. Doesn't mean that we need to spend more than five billion dollars. How about we just spend that money that we've got in a better way? And relieving the carer burden, you know, is also part of that. Okay, big question. Soz, I know you hate it, but bad luck. What causes motor neuron disease?
Lyndal Henden: I would love to be able to answer that question and I hope that in time we will be able to answer this question and have some answers for the people in these communities and in this health district. But yeah, right now we don't know. We think it's likely a combination of genes and the environment and
Jane: So stop, you think with sporadic it's a combination of genes and health and f so do you think that s with sporadic, if you're genetic genetically predisposed and you come into contact with something that that may trigger and D?
Lyndal Henden: Yes, so the yes. So like I mean there are some people who have the sporadic form of motor neuron disease who do have genes that cause the disease, but they don't have a family history. So they're classified as sporadic. And so perhaps an alternative way to think about it is genetic and non-genetic. So we can't find an obvious genetic reason that would explain why these people have motor neuron disease, then we would look at the environment and occupational exposures. And that task is it's it's a lot more challenging than looking at genes. Genes,
Jane: Yeah.
Lyndal Henden: at least in from my point of view, easy, low-hanging fruit. We can rule it in, rule it out really easily if we have a blood sample. It's if we rule that out then what are we looking at and what are we looking for?
Jane: Yeah.
Lyndal Henden: And that is trying to find a common theme across people. That's really hard is you need yeah, you need extensive data to be able to answer that longitudinally. What have people been exposed to throughout their life? Like is it from something 15 years ago? Is it in the past 10, 5 years? Is it something what is it? It's really hard. Yeah, so I guess it's really hard to answer that question, what's causing it. The first thing we wanted to do was either rule in or rule out the genes, and once we've done that, it's likely we're gonna be concentrating on environmental factors.
Jane: So again, we need the data. So we need data. Where were you born? Where did you live? What did you do?
Lyndal Henden: Yeah.
Jane: What sport did you play? Were you in the armed forces? Blah, blah, blah. Any common threads that we can think of now. And by asking a broader range of questions than six, we need to ask a broader range of questions to be able to use big brain nuts like you to be able to see the data. See any
Lyndal Henden: Mm. Look for the peck.
Jane: Look for the patterns, any commonality.
Amanda Wright: And that and that's right. And I think I think what Lyndall and I are trying to do going forward is we don't think that we can solve the cause of and D purely based on, you know, Western New South Wales LHD. But
Jane: Sure.
Amanda Wright: what we're trying to do is set the framework for how notifiability can be set up so that somebody gets notified, then how do we get their bloods? How do we get their questionnaires? How do we get all these samples together? And it it's it's actually logistically harder than what we kind of even thought together to work out how we're going to get all this and put it all together. So if we can do it in this health district, it can easily be extrapolated to the rest of New South Wales,
Jane: This
Amanda Wright: to the rest of Australia. And w and and when we have that much data, that that's incredible. So setting the benchmark it to to how to do it is what we what we need to do now. And we think that we're at the forefront of that.
Lyndal Henden: Mm. Mm.
Jane: Good. I think you are too. I mean, I've been saying for years, how can researchers research if there's no base data?
Lyndal Henden: Mm-hmm.
Amanda Wright: Mm.
Jane: It's extremely di you're just swimming around in a pool of blackness. Okay, so that's what you want to do. Just going back in to what you were just saying then, Amanda, is it purely logistical problem issues? So someone's diagnosed. Data's put in so no notifiable disease button is pushed. So then let's say someone in that health district, you get an email saying someone's just been diagnosed,
Amanda Wright: Mm-hmm.
Jane: then you want to trigger a team to say, Okay, we need bloods, we need questionnaires, we need whatever else you need. Is that what you're thinking?
Amanda Wright: Yeah, so the the logistics of it comes down to how samples are prepped. Samples are normally prepped in a lab. We don't have a lab in Wolgut. So how do we get a sample and and and and it comes down to the the fine print. So a sample for DNA extraction to look at genes, that can be kept at room temperature. That's easy. We can we can I can commute to Wolgut, take some samples, send them to Lindell in the lab at Macquarie. Perfect. But when we're starting to look at other factors like you know, biomarkers in urine and biomarkers in blood, those samples need to be spun with a centrifuge. they need to be frozen straight away. There's a lot of processing and how we how we're going to do that is is is the big question. How do we set up a travelling lab is my is my goal and that's my dream dream job to have
Lyndal Henden: Yeah.
Jane: Okay.
Amanda Wright: travelling lab, but that's millions millions of dollars. So, you know, starting to think about these questions ahead of the curve of of what notifiability
Lyndal Henden: Yeah.
Amanda Wright: means to us as researchers is is where we stand right now.
Lyndal Henden: But it's also people are willing and wanting to contribute to studies
Jane: Yeah.
Lyndal Henden: and research and and aren't afforded the opportunity to do so because the barrier is where they live or or f or that maybe they don't even know of these opp that these opportunities do exist and that they've been given to some people and not others. And people are I I people are willing and wanting to, but
Jane: yeah.
Lyndal Henden: it's getting out there and and and collecting Like for example, yeah, collecting the blood samples or the biospecimens that we need and processing them in a way that they're like they might not be used this year or next year. The blood certainly will be. But if you know, if we find something that we think is interesting, they may be used in three, four, five years time. There's longevity with this and so it's not just your sample is just here and it's it's got one purpose. It will help with research and studies for many years to come and potentially in many more years. It's yeah, it's it's just thinking long term in the big picture. You wanna do it once, do it right. You
Amanda Wright: Mm.
Lyndal Henden: you don't get a second chance at this.
Amanda Wright: And what and what we want to see is is these people who live so remotely from a a clinic such as Macquarie where research can happen. We want them to be able to contribute if they want to contribute. And we wanna and we wanna take the research rurally to
Jane: And they really want to contribute. Yeah. Yeah.
Amanda Wright: them.
Jane: Robert and I had well, he living with MND had his all of his samples taken and mine were taken too because, you know, we live together. and that still gives me real comfort now knowing that our DNA is in the bank, that that our blood is there, that our urine is there. It it it makes me feel Like I'm helping, good.
Amanda Wright: Mm.
Lyndal Henden: Mm.
Jane: And I know that Robert felt good that he that it was going to be there, you know, in perpetuity, really, that to be used whenever you need to use it.
Lyndal Henden: Hmm. It does and it does help. And I know each person's samples are like crucial. They're they're so valuable. Like if you think you're in you know, you're one person out of a larger number, but we couldn't do this without every single person. And so yeah, it's yeah, it we need a lot. like in large numbers of people to usually be able to find patterns for something that's as complex as motor neuron disease. But yeah, there's huge value in contributing and just knowing that it will get used and it's going to hopefully help people and help us answer these questions.
Jane: So big, isn't it? Okay, Amanda, what do want to do with this research now?
Amanda Wright: I would like to see it equitable to all patients living rurally across Australia where everyone can contribute equally. I would like to see us continue to collect the data and as as notifiability comes in, we we think you know the way we've been collecting by paper will hopefully start to to be obsolete. That would be nice.
Jane: Yeah. I I wasn't I wasn't diminishing you in any way, shape or form before. I'm just astonished that in twenty twenty six you would have to do that to gather this data. That's all. It's f what you've what you've done is phenomenal. Yeah.
Amanda Wright: Yeah, yeah. Yeah, I s I suppose that is surprising. and then I would like to see, yeah, I would I would like to see you know, I'm quite passionate about Western New South Wales. I I would like to see this become a a place where where research can be conducted and that that patients get get the equitable care that they require.
Jane: Best practice. Yeah.
Lyndal Henden: Mm.
Amanda Wright: Mm, exactly.
Jane: Linda, what do you want to do with it?
Lyndal Henden: Mm. I mean, as as like in in short term, it's just focusing for me, it's an it's on the South District. Long term it's expanding out
Amanda Wright: Mm.
Lyndal Henden: into other regions of New South Wales and hopefully Australia. there's one thing that I did wanna say that is for the people who live in these communities, like this might have come as quite of a a shock if you this
Jane: Yeah.
Lyndal Henden: this study and it might be Yeah, quite hard to to hear if you are in Oberon or you're in Walgett, then you like you feel maybe targeted or what whatever. Like just to not be alarmed by these findings. we don't believe that this is unique to these to this health district and to these communities. We just don't have the data to look at this more extensively in other places right now. And so it could just be this is what happens in rural communities. And this is just the start of a larger area of research. and hopefully, yeah, I guess there's yeah, there's a sorry to sidetrack that one a little bit further, but yeah,
Jane: No, no.
Lyndal Henden: I would like to see this rolled out more broadly. But then yeah, the message to the people in these communities, I think, who maybe are feeling this and are feeling quite shocked is yeah, it's really unfortunate and please don't be alarmed by this. We are we're working really hard as well to try and figure out what's going on. And we don't believe this is unique.
Jane: You two have worked on other research that showed that, Australia wide, that y there's a forty percent higher of incident of MND in Tasmania and twenty percent higher incident in South Australia. So that's just only when you start looking at what you can look at. So yeah, what you said is entirely valid in that it probably is h higher incidence that we're aware of at the moment, but we don't have the data. So yeah.
Amanda Wright: We don't.
Lyndal Henden: No, and like as Australia's huge, like it the
Jane: Massive.
Lyndal Henden: massive and most of the population just lives in these capital cities. And when you cut you c you get one number for a whole country, it doesn't show the picture and the nuance of what's going on within different regions in that country. And so Australia pr perhaps shouldn't be looked at as a as a country. Maybe it should be looked at yeah, like more refined as
Jane: State by state. Hm. Yeah.
Lyndal Henden: Yes, and even region by region so that we can figure out what's going on 'cause yeah, the it's huge landmass, very we're exposed to people who live rurally are exposed to unique environmental factors that people who live in metropolitan centres necessarily aren't exposed to. It's just, yeah, there's a there's a lot more to do to to figure out what's going on here. And yeah, I think a study like this that focuses on a particular region, is incredibly valuable. It's a it's
Jane: Mm-hmm.
Lyndal Henden: a great place to start. It's it's not the place to finish. it's valuable it's a valuable starting point.
Amanda Wright: Mm.
Jane: Amanda?
Amanda Wright: yeah, I I I echo what Lindell's saying that we want to see this go nationwide. we we have the resources, we have the capability, we just need the the data collection points to to start to happen. And that that's government that needs to do that. And so and and once once this data starts to come in, we we can really analyze it and really get to the bottom of the cause. and just to echo what Lindell said You know, we've got we've got a unique opportunity in this country to look at rural and metropolitan almost separately because there's not many countries in the world where people can live and stay for the whole lives,
Jane: Yeah.
Amanda Wright: you know, thousands of kilometers, hundreds, thousands of kilometers from from any exposure, environmental exposures that are happening happening metropolitanly. So
Jane: Yeah.
Amanda Wright: if we think it's pollution, we can look at, you know, our city. and metropolitan areas to look at that. And if we think it's pesticides, we can look at other populations. So really teasing out that is something that Australia has the opportunity to do.
Jane: Did you two were you there when Norman Swann gave his talk the other day?
Amanda Wright: Yes, we were.
Lyndal Henden: Right. Yeah.
Jane: Was was very good, wasn't it? Yeah.
Amanda Wright: Yes, yeah. it was it was good to hear him speak. He's he's got an open mind and he said to keep the research open and that's something
Jane: Yep.
Amanda Wright: that we will take on board. and we we always have taken on board. We're we're researched.
Jane: Well, you have, and that's why I said it, because he said to look outside the box, which
Lyndal Henden: Mm.
Amanda Wright: Yeah.
Jane: we all should do in our day to day lives, I think, but you two are you you and your your fellow researchers are looking outside the box.
Amanda Wright: That's right.
Jane: so what he was talking about is what you've already started to do. Okay, what do you want to say before we wrap it up and you have some lunch?
Lyndal Henden: Mm-hmm.
Amanda Wright: I guess you know, I think I think I haven't really spoken too much about how this research really started and the reason why I took this on and and the reason
Jane: Do it. Tell us.
Amanda Wright: why I got very passionate about this was because when I started as a medical student day one in the hospital, my very first day on clinical rotations, which is overwhelming as it is, I saw my first patient was an and D patient. And I thought that's just strange, you know, that that this is the first patient I see and and it and it came about by people and I sort of say, there's D patients and and then it just escalated from there, everyone saying, we have a lot of and D patients and I guess and it's something that was echoed at the conference as well, people coming up to me saying, You know, in Tasmania we have pockets here and we have pockets there and I'm I just really want to see this start
Lyndal Henden: Yeah.
Amanda Wright: systematically systematically studied because it's important.
Jane: a first patient kind of predetermined the rest of your life.
Lyndal Henden: Hmm.
Amanda Wright: I think it it sort of spoke to once a researcher, you're always a researcher and I couldn't let that that go without drawing attention to it, which is what we've circled back to here today.
Jane: Yeah. Yeah,
Lyndal Henden: Yeah, yeah.
Jane: exactly. Linda?
Lyndal Henden: well we're gonna keep going. We're s we're we haven't finished the job just yet. We investing a lot of our time trying to figure out what's going on here. So hopefully in time to come there'll be more answers and we'll be yeah, very happy to we'll be very happy when we have answers. but we are continuing to put a lot of effort in and trying to figure out what's going on. So yeah, I No. Do you go mad?
Amanda Wright: I was just gonna say that like this isn't just a Lyndolyn and me situation here. Like there's a lot of people that have contributed to this. And I think
Lyndal Henden: Yeah.
Amanda Wright: we really need to thank Professor Dominic Rowe. He has he is the driving force behind our passion. and and his passion is now our passion. his team, Lindell's team and and Kelly Williams, Associate Professor Kelly Williams, they're they've always been behind this supporting it. And then and then there's also the neurologists here on the ground in Central West, and then there's the community care team who have done the most exceptional job of looking after these patients, as well as you know, keeping keeping records so so that when we we have this opportunity. So there's there's there's a big team behind this.
Jane: Couple of things I want to say. Dom and Kelly are so proud of you. So, you know, brilliant. Very proud. just I wanted to ask a particular question. The clinical team keeping those records, have they mentioned how difficult it is for them to do that? Is it a burden on them or is it something that they can just integrate into their normal care?
Amanda Wright: yeah, good question. I d I don't think it is a burden, but it comes down to to the ability of people to to do good record keeping. You know, organization is key here and and they've done an an exceptional job of of doing that. So I mean they keep records obviously for their own to look after their own patients, but to be able to translate that into a to research findings, yeah.
Lyndal Henden: Mm.
Amanda Wright: it would it wouldn't be bad without
Jane: Yeah, that's something worth thinking about.
Amanda Wright: them, so
Jane: Yeah. I think put a little bit of thought into that because I hear from around the country that the clinical teams are just too damn busy to be able to take records. And my thinking is well you're doing records anyway, because
Amanda Wright: Hm.
Jane: you have to to keep f but so maybe if there's some form of process that or you know, mm template that they use that we could be that could be rolled out across the country.
Amanda Wright: that use. Yeah. Yeah, that's that's interesting.
Jane: Yeah.
Amanda Wright: Interesting point. and I think they're really they're really excited to work with us. They're now, you know, helping us contact communicate with patients about the up and coming research as well that we want to conduct. So, you know, they're really excited to to see this
Jane: Yeah.
Amanda Wright: turned into research. So it's it's great to work with them, you know.
Jane: Thank you to all of those. And how many neurologists do you have up in Western City Western District? Yeah. Three. For three, that's a hundred thousand each.
Amanda Wright: Western New South Wales. We have three neurologists. Three. Yeah. Two in Yeah, that's true. That is true. three neurologists.
Jane: Bloody hell.
Amanda Wright: one in Dubbo, two in Orange, permanent neurologists, and then there's a few few people that come to to Locum. hopefully it'll be four when I finish in eight years. so
Jane: Ha ha ha.
Amanda Wright: But yeah, at the moment it's currently three trying to look after all these patients.
Jane: Okay. How can the and D Lived Experience Community help you? How can we help you?
Amanda Wright: I think the biggest thing that we really need is just the support to to continue to keep going. you know, we don't want to do research that people aren't interested in. And and the
Lyndal Henden: Mm.
Amanda Wright: feedback that we're currently getting is that people would love to contribute and I and and that that keeps us going throughout the day, writing these grants, trying to get this funding because, you know, we we want to contribute back to society and back to the and D community themselves. So any any feedback and and it can be negative feedback too that, you know, we're not doing it right. We we we
Lyndal Henden: Yeah.
Amanda Wright: need that input.
Lyndal Henden: Yeah.
Jane: Okay. so anybody who has feedback on this podcast or if you've read any of the articles, come to me in the first instance and I'll pass it on to Amanda and Lindell.
Lyndal Henden: Thank you.
Jane: any feedback, as Amanda just said, doesn't all have to be positive, it can be critical too. But we would like information on how to do it differently. not that I think you need to do it differently, but if there's yeah, any feedback.
Amanda Wright: Yeah, absolutely. We will do that.
Jane: Send to me and then I'll pass on.
Amanda Wright: Yeah.
Lyndal Henden: Thank you.
Jane: You two are amazing. Thank you so much for your time today. I'm very grateful. I
Lyndal Henden: Thank you.
Jane: when we were in Adelaide, I think Lindell, I couldn't sleep one morning. One I I just had bad sleep. So I turned the radio on and at 1 a.m. you were on the radio. It's
Amanda Wright: Yeah.
Jane: like I can't get away from these people. Just
Lyndal Henden: Timely, isn't it? Well, I certainly wasn't awake at one
Amanda Wright: Yeah.
Lyndal Henden: AM doing that, so
Jane: I w no, I know, I figured it was pre-recorded, but whatever.
Lyndal Henden: nice coincidence.
Jane: Amazing coincidence. No such thing, I don't think, in this universe as a coincidence. Anyway, congratulations, both of you. This is sensational stuff. It really is. And it's the beginning of some really important information. Thank you.
Lyndal Henden: Hm. Thank you. And thank you for taking the time and taking the interest in everything that we do.
Amanda Wright: You crane.
Jane: that's who I am. Well I see you next week, Lindel.
Lyndal Henden: You will. Yes, see you then.
Jane: Great. See ya Monday. Amanda. Congratulations, Doctor Amanda Wright. Doctor Doctor. Yeah, I was thinking that. What did we say, Doctor Doctor?
Amanda Wright: thank you. Yeah, that sounds good.
Lyndal Henden: Doctor.
Jane: Okay. All right.
Lyndal Henden: I'll take it.
Jane: Thank you, Doctor Doctor. Thanks, Lindell. Bye.
Lyndal Henden: Thank you.
Amanda Wright: Okay, thank you.
Amanda Wright: Good morning, Jane. How are you?
Jane: very well. And then we have Dr. Lindell Hendon. She's a postdoctoral, I can't never say that word. Research Fellow and Senior Lecturer at the Advanced Gene Discovery Team within the Mulcora Uni MD Research Centre. I met these two again at the MND conference recently, and they're extremely excited because they just had some amazing research published. So I asked them if they would come on and discuss it with us. And they've obviously said yes because they've both turned up. So, but before we get into the research, we like to know who you are, not what you do. So, Amanda, who are you?
Amanda Wright: So I'm Doctor Amanda Wright. you wanna talk a little bit about my background?
Jane: I want to talk about who you are as a human being. Hm.
Amanda Wright: okay. Well, I am a mother to two beautiful children, Millicent age nine and Harriet age seven. Shout out to them because they'll be very excited to hear that.
Jane: Shout out to you two.
Amanda Wright: and I live in Orange in Western New South Wales. I have just finished medical school as of two days ago.
Jane: Yay.
Amanda Wright: and my background was in I used to work in the motor neuron disease centre as a postdoctoral fellow there. I decided to pursue medicine. So this is where all of my career paths have come together here.
Jane: so we were just talking before we started recording, you've been studying for fourteen years. But
Amanda Wright: Mm.
Jane: you've also been studying whilst you've been a mama. I mean, that's phenomenal. Yeah, don't don't negate that. That's amazing.
Amanda Wright: Yes. Yeah. Yes. I'd also put a clause on that that I have a very supportive partner who has helped me through that entire process. Shout out Shout out to Tom.
Jane: Okay, you we really need shout out there too. Yeah, Tom, shout out. Thank you.
Lyndal Henden: Yeah.
Jane: Lindell, who are you?
Lyndal Henden: Hi, yes, so my name is Dr. Lindell Hendon. So I am I'm from New Zealand, been in Australia for I think 12 years now. and my background is mathematics and statistics. And so I try to apply it to medical data sets to try and figure out what's going on with different diseases. And I've been working on motor neuron disease now for just over eight years. mainly on gene discoveries, but branching out into more clinical research as well. And I will just say that as Amanda, I'm just gonna toot your horn a little bit more here, everything that she has done so far is just through passion. It is she doesn't get paid for any of this. She's been a student the whole time and yet passion and dedication. So Amanda, you deserve a big congratulations here.
Amanda Wright: Thank you, Lindell.
Jane: You really do. It's phenomenal what you have done to this point. And it's only to this point. You're just a baby. my God.
Lyndal Henden: Hmm.
Amanda Wright: Ha ha
Jane: Okay, so tell us about the research that you had published last week. You did a a presentation at the N D A conference. It's
Amanda Wright: Yeah, so the research that we showed was that in Western New South Wales local health district, so this is quite a large health district and the way that you know our health, which I probably wasn't aware of when I start before I started medicine that how you know health works within these local health districts. So this one is the largest in New South Wales. It goes all the way from Bathurst in the southeast corner up to Cobar and up to Wolga and all the way up to the border. So it it it's a huge area that's covered here. So it's it's equivalent to the size of Germany, the the health district itself.
Jane: Do you know what the population is of that area?
Amanda Wright: Yeah, it's almost three hundred thousand. I think about two hundred two hundred and eighty to three hundred thousand. So
Jane: Okay. Okay. Yep.
Amanda Wright: and it hasn't changed very much over the last census, but hopefully we'll see what the new population is in the next census data as well, which Lyndall and I being mathematic nerds are really excited to see. So
Jane: Ha ha ha.
Lyndal Henden: Ha
Amanda Wright: so and then what what the research has shown that we have Incidence, which is the number of new cases being diagnosed of MND per year, was approximately four per hundred thousand. so essentially double what the Australian statistic was thought to be, Australia-wide, and also four times that the rate of what the global incidence is is.
Jane: Four times.
Amanda Wright: Four times
Lyndal Henden: Mm.
Amanda Wright: the incidence rate. Yeah, so that's the number of new diagnoses. And then what we also showed was that prevalence, that's the total number of people living with the disease, that was sitting at about eight per 100,000. But that that statistic is equivalent to what was expected from the Australian the Australian estimates, which is not a great statistic because what we're showing is we've got a lot of people being diagnosed and then they're not living very long.
Jane: So what I read from that research is that a majority of these people are being diagnosed with bulbar onset.
Lyndal Henden: Correct.
Amanda Wright: Yeah, that's correct. Do you want to speak to that, Lindell?
Lyndal Henden: Mm, yeah, so I found this result quite surprising. So usually there's between I would say between twenty five to thirty-five percent of people with motor neuron disease have bulbar onset, motor neuron disease. And we had I believe around forty percent of our of people in this study had had bulbur. But what was quite surprising was This number in females. So again, it's around that twenty-five to thirty-five percent. But in females, we had sixty percent of our females had Yes. Yeah,
Jane: it was sixty. Lord.
Amanda Wright: females with boba, yeah.
Lyndal Henden: females with bulb or onset motor neuron disease. So that result because I I look at a lot of different I look at data sets and and clinical data, and this is just a number that I will generate for every data set that I get given with people with motor neuron disease. And I always see it sitting around that twenty five to thirty thirty five percent and that's what's commonly reported in the literature. So when I saw sixty percent, I was quite surprised by that. It's like a flip of what we would traditionally see. And we do have more females, a higher number of females with motor neural disease in in this study than than what we would usually see as well.
Jane: Was it fifty one percent?
Lyndal Henden: Correct.
Jane: So what is it norm normally from a data perspective?
Lyndal Henden: So you Yeah, so usually so motor neuron disease has a sex bias and there's usually more males affected than females. usually sixty percent males, forty percent female. when we have a look at data sets with the genetic form of motor neuron disease, we tend to see a more fifty fifty split of males and females. but even then we don't usually see this bulbed predominance phenomenon.
Jane: Okay, I'm gonna ask you a terrible question. Why? Why this predominance of bulba?
Lyndal Henden: Yes, I think
Jane: I'm
Lyndal Henden: why is the million dollar question indeed for yes,
Jane: It's the billion dollar question actually.
Lyndal Henden: why why we have a higher burden of motor neuron disease and why we have a higher burden of bulb onset motor neuron disease right now we don't know and that is something that we are really trying to understand. But we c we can't even say right now what's going on.
Jane: How are you trying to understand?
Lyndal Henden: We are applying for money to
Amanda Wright: Mm-hmm.
Jane: Ha ha
Lyndal Henden: I would say everything probably starts there. What sorry amandt I have just submitted this morning funding an application for funding. So the study doesn't stop here. We are going to continue to monitor this health district in the years to come. And what we'd like to do is to start collecting biospecimens from these individuals. The first thing and this is what I would say is the low-hanging fruit is to look at genes. So because we have a more 50-50 male to female split, which we see in our genetic cohorts, we would like to see if if G a genes genes might explain this phenomenon or families might explain this phenomenon as
Jane: Inspirotic as well.
Lyndal Henden: Well, at this stage we don't actually know who in this cohort is familial and who is sporadic. Sandage,
Jane: really?
Lyndal Henden: do you want to speak to that?
Amanda Wright: Yeah, so I guess it kind of comes down to the way that the data was collected. So the way that all this was collected was through a bunch of different ways that and D patients would access health care in the region. So that's through going through neurology reports, through hospital records, and through like palliative care records. So I tried to sort of get any way that anyone would access health. and then troll through those records and and in the end that that resulted in going through like paper records in the bottom of a New South Wales Health
Jane: for the love of God.
Amanda Wright: system. So so the record is quite fragmented and this is why the notifiability has become so important. And you know we're we're very proud that we got to put this data together, but but it it took a lot to get it to to that point. So in saying that to get records on people's genetics is difficult as it is with that's the way we were collecting the data. But but we did also notice in so we're looking through like neurology records. So some patients are sent for genetic screening, but not all of them. And I think what we found in the end is that we only had records for that on seven,
Lyndal Henden: Seven.
Amanda Wright: seven of the 51 patients, which means we we think that. Majority of these patients have not been genetically screened. and and and it comes down to isolation as well. So, you know, some of these patients are traveling 10 hours to see a neurologist, they don't do that very often, it's just near impossible. So, so we have an underrepresentation of the genetics. So that's what what we aim to do next, and our first port of call is to make sure that everybody is genetically. screened, which obviously is extremely important. and it's something that Lyndall and her team at Macquarie, our team at Macquarie do exceptionally well. and I can let Lyndall speak to her new study, but it shows that that that's something that we can do is to see if these people are linked in in families, and then to rule in or rule out a genetic cause for our high case load and our interesting demographics that we're seeing.
Jane: Okay. It's two thousand and twenty six and you had to trawl through paper records to gather this information.
Lyndal Henden: Mm-hmm.
Amanda Wright: yeah, but also yeah so we did have to trawl through paper, some some paper records to collect for for everybody. I will say that there are the community care teams have been keeping amazing records as well from 2023. But again, to make sure that everybody has been accounted for, we've had to, yeah, that has involved paper records as well.
Jane: Let's just talk for a minute before we talk about what Lyndol's going to talk about is the announcement about the notifiable disease register in New South Wales. So, in the perfect world, what will happen is that every time someone in New South Wales is diagnosed with MND via their neurologist or their GP or wherever they're diagnosed, that health professional will have to enter. that diagnosis online that goes back to the health department, yeah? Like
Amanda Wright: Mm-hmm.
Jane: we do with monkey pox for the love of God now.
Lyndal Henden: Mm-hmm.
Amanda Wright: Mm-hmm.
Jane: When do you think this is gonna start?
Lyndal Henden: I believe it should have started on the first of September. and I think I think it's it's really great that we've gotten this far. until that data is sitting on my desk, it probably hasn't gone far enough.
Jane: Correct.
Lyndal Henden: I would you need the people who are passionate. and invest it to be looking at this as well. So I mean, yeah, it it's it's new and I and I assume the it the how the government does this, it still needs to be set up. so there may be some time before data starts to come in and it's collected and it's available. I'm not sure how we go about accessing any of this information at this stage. So in that time we are going to just continue to do what Amanda's been doing. and just collect data how we've been doing it. But it would be the most amazing thing if we didn't have to do that. And we could just get
Jane: yeah.
Lyndal Henden: it. Mm.
Jane: And also if we could get this set up properly through the health department in New South Wales, maybe they could aim for best practice and then we could roll roll that out Australia wide and then we could roll it out globally, you know, and what an amazing thing that would be.
Lyndal Henden: Absolutely, that would be the dream.
Amanda Wright: Yeah, and that's right. And that's and that's something that Lindell and I have really started to gain passion for is taking those results and then turning them into something that's tangible research for patients as as well. So you know, at the moment what we've done here in Western New South Wales LHD is essentially that, is essentially notifiability. We've counted the numbers. But what we want to see it happen is switch to you know finding genes, finding environmental causes. So we're not just counting numbers, we're actually taking those and turning them into outcomes. So I think that's what what we're really aiming to do here is to to t start to take biospecimens from patients so that we can get a I mean my biggest passion is to get indication of what's happening in rural patients because at the moment
Jane: Yeah.
Amanda Wright: they've been underrepresented in the research. and if we think it's an environmental cause, we need to be studying the people who are
Lyndal Henden: Mm, mm-hmm.
Amanda Wright: close to environmental aspects.
Jane: I think I said to you last week, Amanda, that on the Let's Talk N D podcast page, I I think we have twelve hundred people on there and I put a call out for people who thought they lived in areas where there are clusters and the and and I have had a lot of responses
Amanda Wright: Mm.
Jane: from people who live in rural regional areas. I think I was talking to you about around the double area and there's a neurology team who when they come in they're visiting twenty patients at home.
Amanda Wright: Mm.
Jane: in that
Amanda Wright: Yeah.
Jane: area. That's a massive amount of people in one in one area.
Lyndal Henden: Mm.
Amanda Wright: It is a massive and those people have been counted in this study as yeah.
Jane: Yeah, in your study as well. So the implications of having 51 people in the Western Health District at the moment, besides the fact that these people have MND, is that if we are not up until this point aware of how many people there are, how are we providing adequ adequate care to these people who have MND?
Amanda Wright: Hmm. Yeah, that's right. And and we do have I I I'm not entirely sure of the complete history, but between palliative care and the neurodegenerative community care team, they were set up for this reason. and they we have a fantastic community care team, but they are small in number servicing a large area. and it's it's difficult for patients to, you know, commute. So th our community care team have to commute to patients all over that health district, you know. And again,
Jane: Yeah.
Amanda Wright: you wouldn't expect someone in Germany to travel from one end of the country to the other, but that's what we have to do here, just for people to be able to access the the correct amount of care.
Jane: So I think you said in the article that I read people were travelling on average have one hundred and seventy Ks to go and see their neurologist, but many more are travelling far more than that. One hundred and forty, okay.
Amanda Wright: Yeah, that's right. Yeah, 140 kilometers was the average. Up to 700 kilometers, just and that's just to see a neurologist, yeah. So some some patients will come to our local neurologists. sometimes our local neurologists will will refer on to specialist care for and D in Sydney. so you know that's another another commute. So often the the patients will be traveling to one neurologist to the next. And then that's just, you know, the tip of the iceberg as to what what they have to go through in a in a regional area.
Jane: Well yeah, so what about Allied health and equipment, all of that stuff? I mean how
Amanda Wright: Yeah, so our community care team do all that but they but they have to they have to commute too to these patients.
Jane: Yeah.
Amanda Wright: So it's it it's difficult to to access
Jane: It's more than yeah, it's more than difficult. And I mean they're doing an amazing job. I'm not diminishing anybody, but all I'm saying is that okay, so the prevalence is far higher. So therefore the resources that we require are far h far higher than we thought. Yeah. Lin
Amanda Wright: Exactly. Yeah, that's correct. Yeah.
Lyndal Henden: Mm-hmm. Yeah.
Jane: Lindel, jump in. What do you want to say?
Lyndal Henden: Yeah, well I guess given that what thirty percent about thirty percent of Australians live rurally or remote, but only four percent of the neurology workforce is rural or remote and this is we're facing an aging population and people who live rurally tend to be older. So you would hope that in future there's there's more access to what these individuals are gonna need. And this is also sort of trying to raise awareness of that.
Jane: Yeah, so it requires planning on behalf of the government, obviously.
Lyndal Henden: Mm-hmm.
Amanda Wright: Absolutely.
Jane: and we need to make it more inviting, interesting for doctors to go rurally as well.
Amanda Wright: Well we do. and I think like my my university Charleston School of Rural Medicine have done an incredible job of training all of so they only take up to this stage they only take rural students, r people from a rural background, and train them in a rural location. What the issue is though is that we don't have the specialist training rurally. So for me who wants to do desperately wants to do neurology. lived here, raised my family here, I can't do neurology training here. I have to go back to Sydney. So or or to a or a major metropolitan area. So we don't have the training pathways for the for specialist neurologists to train. And then this cycle perpetuates that cycle of only having four percent. I think that equates to thirty neurologists that live outside of a major metropolitan area across Australia.
Jane: thirty.
Amanda Wright: Yeah, four percent of the workforce, yeah.
Jane: Okay.
Amanda Wright: Sorry to dump
Lyndal Henden: Yeah.
Amanda Wright: all that on you, Jane. Yeah,
Jane: Yes. And yeah, I didn't realise it was only thirty.
Amanda Wright: yeah.
Jane: just as an aside, so you are gonna go back to university at some point and be study to become a neurologist?
Amanda Wright: No, I once I finish medical school, then then you start your training after medical school you start the training pathway to be a neurologist. So that's another eight years from my point now.
Lyndal Henden: I know.
Jane: That'll be twenty four, twenty five years that you'll be studying.
Amanda Wright: Yeah, I try not to think about it like that. Yeah, pretty much.
Jane: We'll be going to your kids' weddings at the same time you graduate, yeah. What do you two think is a solution to the problem? let's not talk about MND course for the minute. Let's talk about how do we get more specialists into rural and regional areas.
Amanda Wright: How do we get more specialists? Yeah.
Jane: Lindell, don't sigh like that. That just sounds defeatist.
Lyndal Henden: Just I am thinking that's a big question. Yeah.
Jane: It's a really big question, but you've got big brains, so
Amanda Wright: We train we train more doctors rurally and we set up the training pathways for s start to end training in a rural area.
Jane: To brilliant and you know, rural areas need that too, you know. It will benefit
Amanda Wright: Yeah, exactly, yeah.
Jane: the economy as a whole, not just for healthcare.
Amanda Wright: Yeah, that's right. So I mean that there's that and then and then in terms of and D, what we need to do is start to set up specialised care like we have at Macquarie Uni outside of a metropolitan area. If we could if we can recreate the equivalent clinics that have a travel component to them, where they travel and not the patients traveling, I think that would be my ideal level of care.
Lyndal Henden: Mm.
Jane: How many do you think we would need of those in New South Wales?
Amanda Wright: Every health district, every
Lyndal Henden: Yes.
Amanda Wright: local health district would need to have their own.
Jane: Okay. Lindo?
Lyndal Henden: I would agree. Every house well, I guess some health districts have more people, so you'd need more than just yeah,
Amanda Wright: Mm.
Lyndal Henden: more than that. yeah, it's a big task. People need a lot of care and a lot of variety in the care that they need. So yeah,
Jane: Yeah.
Lyndal Henden: I and I know that as people progress, just leaving the house is hard. So I truly believe that peop like home visits and taking like unburdening a situation that's already really difficult is the way to go. That would be I'd love to see that in the future.
Jane: Well, for the person with and D, but also for their carer. So if we're talking
Lyndal Henden: Yes, absolutely.
Jane: about is just referring to what you said before, because we're in rural areas, the incidence of over sixty-five is higher. If we don't if we're over sixty-five, then we're on aged care, then we don't have access, blah, blah, blah, blah. And also if you are in your seventies, I mean it's hard enough when I was in my whatever I was, caring for Robert. And but if you're in your seventies and eighties and you're caring for a person with and D, getting them out of the chair is hard enough, let alone getting them out of the house. So
Amanda Wright: Hmm. Yeah.
Lyndal Henden: Hmm. Hmm.
Jane: this form of care that you're talking about is actually imperative. Number one, to provide better care for the person with and D, because they are suffering rural and regionally at the moment. And also we can't discount the carer burden as well, because it's huge.
Lyndal Henden: Yes, absolutely. Yeah.
Jane: So for the two of them, yeah.
Lyndal Henden: Yeah. It's a
Jane: Okay.
Lyndal Henden: big picture.
Jane: It's a big picture. And the first question I asked you both, the answer was money. And you know what? The answer to this question is also money.
Amanda Wright: Yeah.
Jane: But in twenty twenty five we spent five billion dollars as an economy on and D.
Amanda Wright: Mm.
Jane: That's just in this country.
Amanda Wright: Yeah, that's right.
Jane: That money has to be able to be spent better and smarter and in a more targeted manner. Doesn't mean that we need to spend more than five billion dollars. How about we just spend that money that we've got in a better way? And relieving the carer burden, you know, is also part of that. Okay, big question. Soz, I know you hate it, but bad luck. What causes motor neuron disease?
Lyndal Henden: I would love to be able to answer that question and I hope that in time we will be able to answer this question and have some answers for the people in these communities and in this health district. But yeah, right now we don't know. We think it's likely a combination of genes and the environment and
Jane: So stop, you think with sporadic it's a combination of genes and health and f so do you think that s with sporadic, if you're genetic genetically predisposed and you come into contact with something that that may trigger and D?
Lyndal Henden: Yes, so the yes. So like I mean there are some people who have the sporadic form of motor neuron disease who do have genes that cause the disease, but they don't have a family history. So they're classified as sporadic. And so perhaps an alternative way to think about it is genetic and non-genetic. So we can't find an obvious genetic reason that would explain why these people have motor neuron disease, then we would look at the environment and occupational exposures. And that task is it's it's a lot more challenging than looking at genes. Genes,
Jane: Yeah.
Lyndal Henden: at least in from my point of view, easy, low-hanging fruit. We can rule it in, rule it out really easily if we have a blood sample. It's if we rule that out then what are we looking at and what are we looking for?
Jane: Yeah.
Lyndal Henden: And that is trying to find a common theme across people. That's really hard is you need yeah, you need extensive data to be able to answer that longitudinally. What have people been exposed to throughout their life? Like is it from something 15 years ago? Is it in the past 10, 5 years? Is it something what is it? It's really hard. Yeah, so I guess it's really hard to answer that question, what's causing it. The first thing we wanted to do was either rule in or rule out the genes, and once we've done that, it's likely we're gonna be concentrating on environmental factors.
Jane: So again, we need the data. So we need data. Where were you born? Where did you live? What did you do?
Lyndal Henden: Yeah.
Jane: What sport did you play? Were you in the armed forces? Blah, blah, blah. Any common threads that we can think of now. And by asking a broader range of questions than six, we need to ask a broader range of questions to be able to use big brain nuts like you to be able to see the data. See any
Lyndal Henden: Mm. Look for the peck.
Jane: Look for the patterns, any commonality.
Amanda Wright: And that and that's right. And I think I think what Lyndall and I are trying to do going forward is we don't think that we can solve the cause of and D purely based on, you know, Western New South Wales LHD. But
Jane: Sure.
Amanda Wright: what we're trying to do is set the framework for how notifiability can be set up so that somebody gets notified, then how do we get their bloods? How do we get their questionnaires? How do we get all these samples together? And it it's it's actually logistically harder than what we kind of even thought together to work out how we're going to get all this and put it all together. So if we can do it in this health district, it can easily be extrapolated to the rest of New South Wales,
Jane: This
Amanda Wright: to the rest of Australia. And w and and when we have that much data, that that's incredible. So setting the benchmark it to to how to do it is what we what we need to do now. And we think that we're at the forefront of that.
Lyndal Henden: Mm. Mm.
Jane: Good. I think you are too. I mean, I've been saying for years, how can researchers research if there's no base data?
Lyndal Henden: Mm-hmm.
Amanda Wright: Mm.
Jane: It's extremely di you're just swimming around in a pool of blackness. Okay, so that's what you want to do. Just going back in to what you were just saying then, Amanda, is it purely logistical problem issues? So someone's diagnosed. Data's put in so no notifiable disease button is pushed. So then let's say someone in that health district, you get an email saying someone's just been diagnosed,
Amanda Wright: Mm-hmm.
Jane: then you want to trigger a team to say, Okay, we need bloods, we need questionnaires, we need whatever else you need. Is that what you're thinking?
Amanda Wright: Yeah, so the the logistics of it comes down to how samples are prepped. Samples are normally prepped in a lab. We don't have a lab in Wolgut. So how do we get a sample and and and and it comes down to the the fine print. So a sample for DNA extraction to look at genes, that can be kept at room temperature. That's easy. We can we can I can commute to Wolgut, take some samples, send them to Lindell in the lab at Macquarie. Perfect. But when we're starting to look at other factors like you know, biomarkers in urine and biomarkers in blood, those samples need to be spun with a centrifuge. they need to be frozen straight away. There's a lot of processing and how we how we're going to do that is is is the big question. How do we set up a travelling lab is my is my goal and that's my dream dream job to have
Lyndal Henden: Yeah.
Jane: Okay.
Amanda Wright: travelling lab, but that's millions millions of dollars. So, you know, starting to think about these questions ahead of the curve of of what notifiability
Lyndal Henden: Yeah.
Amanda Wright: means to us as researchers is is where we stand right now.
Lyndal Henden: But it's also people are willing and wanting to contribute to studies
Jane: Yeah.
Lyndal Henden: and research and and aren't afforded the opportunity to do so because the barrier is where they live or or f or that maybe they don't even know of these opp that these opportunities do exist and that they've been given to some people and not others. And people are I I people are willing and wanting to, but
Jane: yeah.
Lyndal Henden: it's getting out there and and and collecting Like for example, yeah, collecting the blood samples or the biospecimens that we need and processing them in a way that they're like they might not be used this year or next year. The blood certainly will be. But if you know, if we find something that we think is interesting, they may be used in three, four, five years time. There's longevity with this and so it's not just your sample is just here and it's it's got one purpose. It will help with research and studies for many years to come and potentially in many more years. It's yeah, it's it's just thinking long term in the big picture. You wanna do it once, do it right. You
Amanda Wright: Mm.
Lyndal Henden: you don't get a second chance at this.
Amanda Wright: And what and what we want to see is is these people who live so remotely from a a clinic such as Macquarie where research can happen. We want them to be able to contribute if they want to contribute. And we wanna and we wanna take the research rurally to
Jane: And they really want to contribute. Yeah. Yeah.
Amanda Wright: them.
Jane: Robert and I had well, he living with MND had his all of his samples taken and mine were taken too because, you know, we live together. and that still gives me real comfort now knowing that our DNA is in the bank, that that our blood is there, that our urine is there. It it it makes me feel Like I'm helping, good.
Amanda Wright: Mm.
Lyndal Henden: Mm.
Jane: And I know that Robert felt good that he that it was going to be there, you know, in perpetuity, really, that to be used whenever you need to use it.
Lyndal Henden: Hmm. It does and it does help. And I know each person's samples are like crucial. They're they're so valuable. Like if you think you're in you know, you're one person out of a larger number, but we couldn't do this without every single person. And so yeah, it's yeah, it we need a lot. like in large numbers of people to usually be able to find patterns for something that's as complex as motor neuron disease. But yeah, there's huge value in contributing and just knowing that it will get used and it's going to hopefully help people and help us answer these questions.
Jane: So big, isn't it? Okay, Amanda, what do want to do with this research now?
Amanda Wright: I would like to see it equitable to all patients living rurally across Australia where everyone can contribute equally. I would like to see us continue to collect the data and as as notifiability comes in, we we think you know the way we've been collecting by paper will hopefully start to to be obsolete. That would be nice.
Jane: Yeah. I I wasn't I wasn't diminishing you in any way, shape or form before. I'm just astonished that in twenty twenty six you would have to do that to gather this data. That's all. It's f what you've what you've done is phenomenal. Yeah.
Amanda Wright: Yeah, yeah. Yeah, I s I suppose that is surprising. and then I would like to see, yeah, I would I would like to see you know, I'm quite passionate about Western New South Wales. I I would like to see this become a a place where where research can be conducted and that that patients get get the equitable care that they require.
Jane: Best practice. Yeah.
Lyndal Henden: Mm.
Amanda Wright: Mm, exactly.
Jane: Linda, what do you want to do with it?
Lyndal Henden: Mm. I mean, as as like in in short term, it's just focusing for me, it's an it's on the South District. Long term it's expanding out
Amanda Wright: Mm.
Lyndal Henden: into other regions of New South Wales and hopefully Australia. there's one thing that I did wanna say that is for the people who live in these communities, like this might have come as quite of a a shock if you this
Jane: Yeah.
Lyndal Henden: this study and it might be Yeah, quite hard to to hear if you are in Oberon or you're in Walgett, then you like you feel maybe targeted or what whatever. Like just to not be alarmed by these findings. we don't believe that this is unique to these to this health district and to these communities. We just don't have the data to look at this more extensively in other places right now. And so it could just be this is what happens in rural communities. And this is just the start of a larger area of research. and hopefully, yeah, I guess there's yeah, there's a sorry to sidetrack that one a little bit further, but yeah,
Jane: No, no.
Lyndal Henden: I would like to see this rolled out more broadly. But then yeah, the message to the people in these communities, I think, who maybe are feeling this and are feeling quite shocked is yeah, it's really unfortunate and please don't be alarmed by this. We are we're working really hard as well to try and figure out what's going on. And we don't believe this is unique.
Jane: You two have worked on other research that showed that, Australia wide, that y there's a forty percent higher of incident of MND in Tasmania and twenty percent higher incident in South Australia. So that's just only when you start looking at what you can look at. So yeah, what you said is entirely valid in that it probably is h higher incidence that we're aware of at the moment, but we don't have the data. So yeah.
Amanda Wright: We don't.
Lyndal Henden: No, and like as Australia's huge, like it the
Jane: Massive.
Lyndal Henden: massive and most of the population just lives in these capital cities. And when you cut you c you get one number for a whole country, it doesn't show the picture and the nuance of what's going on within different regions in that country. And so Australia pr perhaps shouldn't be looked at as a as a country. Maybe it should be looked at yeah, like more refined as
Jane: State by state. Hm. Yeah.
Lyndal Henden: Yes, and even region by region so that we can figure out what's going on 'cause yeah, the it's huge landmass, very we're exposed to people who live rurally are exposed to unique environmental factors that people who live in metropolitan centres necessarily aren't exposed to. It's just, yeah, there's a there's a lot more to do to to figure out what's going on here. And yeah, I think a study like this that focuses on a particular region, is incredibly valuable. It's a it's
Jane: Mm-hmm.
Lyndal Henden: a great place to start. It's it's not the place to finish. it's valuable it's a valuable starting point.
Amanda Wright: Mm.
Jane: Amanda?
Amanda Wright: yeah, I I I echo what Lindell's saying that we want to see this go nationwide. we we have the resources, we have the capability, we just need the the data collection points to to start to happen. And that that's government that needs to do that. And so and and once once this data starts to come in, we we can really analyze it and really get to the bottom of the cause. and just to echo what Lindell said You know, we've got we've got a unique opportunity in this country to look at rural and metropolitan almost separately because there's not many countries in the world where people can live and stay for the whole lives,
Jane: Yeah.
Amanda Wright: you know, thousands of kilometers, hundreds, thousands of kilometers from from any exposure, environmental exposures that are happening happening metropolitanly. So
Jane: Yeah.
Amanda Wright: if we think it's pollution, we can look at, you know, our city. and metropolitan areas to look at that. And if we think it's pesticides, we can look at other populations. So really teasing out that is something that Australia has the opportunity to do.
Jane: Did you two were you there when Norman Swann gave his talk the other day?
Amanda Wright: Yes, we were.
Lyndal Henden: Right. Yeah.
Jane: Was was very good, wasn't it? Yeah.
Amanda Wright: Yes, yeah. it was it was good to hear him speak. He's he's got an open mind and he said to keep the research open and that's something
Jane: Yep.
Amanda Wright: that we will take on board. and we we always have taken on board. We're we're researched.
Jane: Well, you have, and that's why I said it, because he said to look outside the box, which
Lyndal Henden: Mm.
Amanda Wright: Yeah.
Jane: we all should do in our day to day lives, I think, but you two are you you and your your fellow researchers are looking outside the box.
Amanda Wright: That's right.
Jane: so what he was talking about is what you've already started to do. Okay, what do you want to say before we wrap it up and you have some lunch?
Lyndal Henden: Mm-hmm.
Amanda Wright: I guess you know, I think I think I haven't really spoken too much about how this research really started and the reason why I took this on and and the reason
Jane: Do it. Tell us.
Amanda Wright: why I got very passionate about this was because when I started as a medical student day one in the hospital, my very first day on clinical rotations, which is overwhelming as it is, I saw my first patient was an and D patient. And I thought that's just strange, you know, that that this is the first patient I see and and it and it came about by people and I sort of say, there's D patients and and then it just escalated from there, everyone saying, we have a lot of and D patients and I guess and it's something that was echoed at the conference as well, people coming up to me saying, You know, in Tasmania we have pockets here and we have pockets there and I'm I just really want to see this start
Lyndal Henden: Yeah.
Amanda Wright: systematically systematically studied because it's important.
Jane: a first patient kind of predetermined the rest of your life.
Lyndal Henden: Hmm.
Amanda Wright: I think it it sort of spoke to once a researcher, you're always a researcher and I couldn't let that that go without drawing attention to it, which is what we've circled back to here today.
Jane: Yeah. Yeah,
Lyndal Henden: Yeah, yeah.
Jane: exactly. Linda?
Lyndal Henden: well we're gonna keep going. We're s we're we haven't finished the job just yet. We investing a lot of our time trying to figure out what's going on here. So hopefully in time to come there'll be more answers and we'll be yeah, very happy to we'll be very happy when we have answers. but we are continuing to put a lot of effort in and trying to figure out what's going on. So yeah, I No. Do you go mad?
Amanda Wright: I was just gonna say that like this isn't just a Lyndolyn and me situation here. Like there's a lot of people that have contributed to this. And I think
Lyndal Henden: Yeah.
Amanda Wright: we really need to thank Professor Dominic Rowe. He has he is the driving force behind our passion. and and his passion is now our passion. his team, Lindell's team and and Kelly Williams, Associate Professor Kelly Williams, they're they've always been behind this supporting it. And then and then there's also the neurologists here on the ground in Central West, and then there's the community care team who have done the most exceptional job of looking after these patients, as well as you know, keeping keeping records so so that when we we have this opportunity. So there's there's there's a big team behind this.
Jane: Couple of things I want to say. Dom and Kelly are so proud of you. So, you know, brilliant. Very proud. just I wanted to ask a particular question. The clinical team keeping those records, have they mentioned how difficult it is for them to do that? Is it a burden on them or is it something that they can just integrate into their normal care?
Amanda Wright: yeah, good question. I d I don't think it is a burden, but it comes down to to the ability of people to to do good record keeping. You know, organization is key here and and they've done an an exceptional job of of doing that. So I mean they keep records obviously for their own to look after their own patients, but to be able to translate that into a to research findings, yeah.
Lyndal Henden: Mm.
Amanda Wright: it would it wouldn't be bad without
Jane: Yeah, that's something worth thinking about.
Amanda Wright: them, so
Jane: Yeah. I think put a little bit of thought into that because I hear from around the country that the clinical teams are just too damn busy to be able to take records. And my thinking is well you're doing records anyway, because
Amanda Wright: Hm.
Jane: you have to to keep f but so maybe if there's some form of process that or you know, mm template that they use that we could be that could be rolled out across the country.
Amanda Wright: that use. Yeah. Yeah, that's that's interesting.
Jane: Yeah.
Amanda Wright: Interesting point. and I think they're really they're really excited to work with us. They're now, you know, helping us contact communicate with patients about the up and coming research as well that we want to conduct. So, you know, they're really excited to to see this
Jane: Yeah.
Amanda Wright: turned into research. So it's it's great to work with them, you know.
Jane: Thank you to all of those. And how many neurologists do you have up in Western City Western District? Yeah. Three. For three, that's a hundred thousand each.
Amanda Wright: Western New South Wales. We have three neurologists. Three. Yeah. Two in Yeah, that's true. That is true. three neurologists.
Jane: Bloody hell.
Amanda Wright: one in Dubbo, two in Orange, permanent neurologists, and then there's a few few people that come to to Locum. hopefully it'll be four when I finish in eight years. so
Jane: Ha ha ha.
Amanda Wright: But yeah, at the moment it's currently three trying to look after all these patients.
Jane: Okay. How can the and D Lived Experience Community help you? How can we help you?
Amanda Wright: I think the biggest thing that we really need is just the support to to continue to keep going. you know, we don't want to do research that people aren't interested in. And and the
Lyndal Henden: Mm.
Amanda Wright: feedback that we're currently getting is that people would love to contribute and I and and that that keeps us going throughout the day, writing these grants, trying to get this funding because, you know, we we want to contribute back to society and back to the and D community themselves. So any any feedback and and it can be negative feedback too that, you know, we're not doing it right. We we we
Lyndal Henden: Yeah.
Amanda Wright: need that input.
Lyndal Henden: Yeah.
Jane: Okay. so anybody who has feedback on this podcast or if you've read any of the articles, come to me in the first instance and I'll pass it on to Amanda and Lindell.
Lyndal Henden: Thank you.
Jane: any feedback, as Amanda just said, doesn't all have to be positive, it can be critical too. But we would like information on how to do it differently. not that I think you need to do it differently, but if there's yeah, any feedback.
Amanda Wright: Yeah, absolutely. We will do that.
Jane: Send to me and then I'll pass on.
Amanda Wright: Yeah.
Lyndal Henden: Thank you.
Jane: You two are amazing. Thank you so much for your time today. I'm very grateful. I
Lyndal Henden: Thank you.
Jane: when we were in Adelaide, I think Lindell, I couldn't sleep one morning. One I I just had bad sleep. So I turned the radio on and at 1 a.m. you were on the radio. It's
Amanda Wright: Yeah.
Jane: like I can't get away from these people. Just
Lyndal Henden: Timely, isn't it? Well, I certainly wasn't awake at one
Amanda Wright: Yeah.
Lyndal Henden: AM doing that, so
Jane: I w no, I know, I figured it was pre-recorded, but whatever.
Lyndal Henden: nice coincidence.
Jane: Amazing coincidence. No such thing, I don't think, in this universe as a coincidence. Anyway, congratulations, both of you. This is sensational stuff. It really is. And it's the beginning of some really important information. Thank you.
Lyndal Henden: Hm. Thank you. And thank you for taking the time and taking the interest in everything that we do.
Amanda Wright: You crane.
Jane: that's who I am. Well I see you next week, Lindel.
Lyndal Henden: You will. Yes, see you then.
Jane: Great. See ya Monday. Amanda. Congratulations, Doctor Amanda Wright. Doctor Doctor. Yeah, I was thinking that. What did we say, Doctor Doctor?
Amanda Wright: thank you. Yeah, that sounds good.
Lyndal Henden: Doctor.
Jane: Okay. All right.
Lyndal Henden: I'll take it.
Jane: Thank you, Doctor Doctor. Thanks, Lindell. Bye.
Lyndal Henden: Thank you.
Amanda Wright: Okay, thank you.
