Podcast – ISFTD Conference 2024 Highlights

The Dementia Researcher podcast, talking careers, research, conference highlights, and so much more.

Dr Anna Volkmer:

Welcome to the Dementia Researcher podcast. In this show, we're going to bring you all the news and highlights from last week's International Society for Frontotemporal Dementias Conference.

I'm Dr. Anna Volkmer and it's a pleasure to be hosting this week's show. Now every year, FTD or Frontotemporal Dementia researchers from across the world come together to share their research and today, my brilliant guests and I are here to share our highlights. I should actually say it's not yet every year. Up until now, it's been every other year, but they just announced at this year's conference that they will be hosting this conference every year from 2026, which is very exciting news. So, if you really want to attend and just couldn't make it, stay tuned because we're going to summarise all our opinions and experiences from this year's conference. Joining me today are Dr. Aitana Sogorb Esteve from University College London, and Dr. Martyna Matuszyk from the Alzheimer's Society. How are you all?

Dr Martyna Matuszyk:

No, I'm great. Hello.

Dr Aitana Sogorb Esteve:

I'm good.

Dr Anna Volkmer:

Fantastic. So why don't we introduce ourselves properly. So, who'd like to go first? Martyna, do you want to say a little bit about yourself?

Dr Martyna Matuszyk:

Yeah, sure. So, I'm Martyna and I work at the Alzheimer's Society as a research communications officer and for people who have no idea what that is all about, we translate the nitty-gritty science and more into a general public-friendly language so that we can all understand each other, both researchers and the general public. And we're really, really interested in research at Alzheimer's Society and really want to prioritise it as well. So that's in a nutshell, me and my job.

Dr Anna Volkmer:

Lovely, thank you. And Aitana?

Dr Aitana Sogorb Esteve:

Yes, hello. So, I'm a senior research fellow at UCL, and I'm also a Race Against Dementia Alzheimer's Research UK fellow and an emerging leader at the UK Dementia Research Institute. So, lots of titles there, but my work focuses on fluid biomarkers for frontotemporal dementia. So, I was really excited about the fluid biomarker session, but also the pathology sessions that were really cool. Very early in the morning I have to say, but very good.

Dr Anna Volkmer:

Wow, I'm looking forward to hearing a bit more about what you thought about them. I should probably introduce myself as well. So, I'm Anna Volkmer as mentioned. I'm also a senior research fellow like Aitana, at UCL as well. I have a slightly different background. I'm an honorary consultant speech and language therapist and I specialise also in developing interventions for people, particularly with frontotemporal dementia, but all types of dementia and their family members.

Now, we're going to talk a little bit about our highlights from the conference. Aitana's already started talking about the platform presentations, but I wonder if we should start with posters. I feel like we should forefront posters because there were so many posters at this conference, and I think a lot of the posters were actually pretty exciting and groundbreaking as well. So, I wonder, Aitana, do you have a particular poster that you wanted to share with us today in this discussion?

Dr Aitana Sogorb Esteve:

Well, I think there were a couple of them that were really interesting for me, but it's on the fluid biomarkers side of it. So there was this very interesting results of a new platform that, it's called NULISA, which is very sensitive, and they measured programmable mutation carriers and there was this poster in which they showed the results, the preliminary results of these specific mutation carriers in which they measured this platform, and it's very interesting because it is the first time that they have include and maybe they are somehow able to measure TDP-43 in biofluids. So, it was really cool to see the results on that.

Dr Anna Volkmer:

Did that link with Professor James Rose? Were they from James Rose lab?

Dr Aitana Sogorb Esteve:

No, this was from Gothenburg actually. It was from Henrik's team in Gothenburg, yeah.

Dr Anna Volkmer:

Because James Rose did a wonderful platform talk. I'm actually thinking about that other gentleman who did a really interesting talk where he talked, and I've forgotten his name. That's Michael Ward, that's who it was. Yeah, he did a really good and I thought that was very clear if I'm looking at his description because he was talking about Biomarker Strategies for TDP-43 and the fact that they were able to identify how that travelled along the cell and then how I think he was kind of saying that they had realised that the cells, this is in total speech therapy talk, so it's probably not that scientific, but I got from that as a lay person that they had realised that certain things were binding with other things they didn't expect them to bind with, to travel along as they travelled the cargo along the cell, is that right?

Dr Aitana Sogorb Esteve:

Yeah, I think so. I think it was also about these ANX, Annexin 11 protein as well. There were a lot of talks about that and how the deposits of TDP-43 were found with some of these proteins as well.

Dr Martyna Matuszyk:

Yeah, I love that talk. That talk was a great bridge between IPSC cell models and why we need tools and validate them. That was a honing message right at the beginning, which was great to see, and all of the stuff about the cryptic exons as well. That was really interesting. I've never heard about this before. So that was interesting from fundamental science point of view. That was great. I loved that talk.

Dr Anna Volkmer:

I think you're right. It was transitional and clear. I keep saying that it was clear. So, Martyna, did you have any favourite posters?

Dr Martyna Matuszyk:

Oh yeah, I actually caught up with one of our dementia research leaders, Dr. Carmen [inaudible 00:07:10]. I apologise for mispronunciation if that is the case, but it was all about cognitive resilience and how that modulates brain structures and functional structures. So, it was a lot of modelling, because he comes from the engineering background actually, so that was applying engineering models to science, but I find the cognitive reserve theory very fascinating, like how do we build up our cognitive levels during our lifetime? And that actually translates into later on if anybody does get FTD later on in life or any type of dementia, how does that differ for each and every one of us later on? That was great. It was amazing.

Dr Anna Volkmer:

So was he saying that that's a structural thing or through cognitive behavioural strategies.

Dr Martyna Matuszyk:

Literally structural brain changes? Yeah, so that was modelling based, I think based on the GENFI cohort. Yeah, no, it was really interesting. We have it on our Alzheimer's Society Twitter, so you could see some of that if anyone's interested, but yeah, no, that was great.

Dr Anna Volkmer:

And our very own UCL, GENFI, and that's the UCL born initiative from Professor Aurora is it's always exciting. I don't know about you, but when I go to a conference and when exciting things get talked about and they're from my own institution, I always feel really proud.

Dr Aitana Sogorb Esteve:

There were so many posters and talks with Dumfy, so it was very cool to see all the work that isn't on.

Dr Anna Volkmer:

I've been to five FTD conferences and maybe either I've not stayed till this stage, or I've missed it. It's been a parallel session, but at the very end they had a lot of the consortiums, and they went through, and they talked about what they do, didn't they? And I thought that was actually really neat. So, they had GENFI talking about how they collect data from all the centres around the world and what data they collect and what their next plans are, and then they had several other groups talking about the types of data. They had all FTD. Oh gosh, there were five or six of them, didn't they? But quite a useful way of explaining actually what they do rather than just seeing the names on the slides.

Dr Aitana Sogorb Esteve:

And also, this NIC network or NIC Consortium. I was very surprised about that because it's a very interesting way of these meetings that they do, you can join and if you have a clinical case that you can discuss, I found that very interesting and I think it will be very useful.

Dr Anna Volkmer:

Yes, the NIC stands for something like, because one was a psychiatry one, wasn't it? Was it a neuropsychiatry something consortium or something like that, and then they had a similar system. There was a presentation about a Japanese group who also there was a Japanese FTD group and they'd come together with all their cases, and I found it really interesting because in the Japanese group, they actually talked about how many diagnoses were overturned, so how many they re-diagnosed with something else, which I thought was really that metric of being able to track, this is the number of cases we talked about, the number of cases we changed.

And so that was one metric, but then the other one, I thought that was a whole different perspective where they presented actual cases to us, didn't they? And then they had a clinical question such as, "Would you ask this family if they wanted to explore whether they had a genetic mutation and is it ethical to tell them that's an option not to tell them that's an option?" And then I really liked, I think that was with the twins, wasn't there? They had two identical twins, and they talked through their female twins, and they talk through their background. I thought that was really clever, engaging.

And actually, as a clinical speech therapist, I'm actually involved in a group like that for non-pharmacological. So, it's groups. We have occupational therapists, speech therapists, and neuropsychologists, and it's a European wide network? Well, no, it's international because we have Americans and Canadians, and we take it in turns to present a case and then we kind of interrogate the case and it's all FTD. We talk about FTD clients and what we often do is talk about what interventions we would've done. So how the intervention was planned, how many sessions we could of, would of, should have given? Who we would've involved in the intervention, but what I've never ever thought of is that that forum could become a conference presentation because it's such an important forum, but I thought it was great. I will name my favourite posters. So, I don't know if you were and maybe Martyna you were, but there was a synchronous caregiver day on the Saturday.

Dr Martyna Matuszyk:

Oh yeah.

Dr Anna Volkmer:

And so, as an interventionist, the treatment posters, any posters that related to the more treatment side were actually, we had to print two copies of our posters. So we had one copy in the caregiver conference and one copy in the scientific conference, and so I was flicking up and down and there was some really exciting poster presentations from across France and Canada, and one of my favourites actually there was one from Canada, a speech and language pathologists they call them in Canada who'd worked with a psychologist and social worker and a few other colleagues, her neurologist as well, and they'd set up a post diagnostic education and support session over eight weeks and it'd been co-produced I think with people with FTD and it was for people and their family members I believe, and they collected some data on it and it actually, it was presented at the caregiver conference, at the scientific conference and they had a poster blitz, so an three-minute on stage blitz.

And I was really pleased they included it because throughout the conference, whenever there were service users involved, they talked about what they didn't know. So in particular, I wanted to flag that the conference was started, the opening speech after the welcome was by Emma Willis, Bruce Willis's wife and it really struck me because she became quite tearful in her opening speech when she said that they were told there was nothing that could be done, and so often people say, "I'm told nothing can be done." And so, I think even these initial information support groups that we are across different countries running a little bit, we're all running them, but actually we need to be sharing knowledge about those groups with all the professionals and researchers involved.

Because I'm sure Martyna and Aitana, you've come across people who've said, "I was told nothing that could be done." Or "I didn't know where to turn." Or "We didn't know what we were supposed to do. We felt abandoned." And often I think other professionals don't know where to point people to, so if we can share this information, I think it helps across the professions work out and including clinical and research. So, I was really delighted that poster went across three forums, does that make sense? Try and reach as many people as possible. Tell us, Aitana, about the fluid biomarkers, the really early sessions and do they relate to your work directly?

Dr Aitana Sogorb Esteve:

Yeah, they do a lot. Actually, one of the ones that I liked the most was a poster blitz presentation, and it was from Hannah Huber, and she presented these remote testing kind of fingerprint devices showing a very good correlation in the measurements of the fingerprick and the venous blood. So, it was very interesting because it's one of the first times that we really see that dry blood spots. So basically, this is these devices in which you just pick your finger, and you drop a drop of blood, and she was showing that she was able to measure in this case, proteomics, which is one of the proteins that decrease in one type of frontal temporal dementia. The levels measured in the blood cast correlate very well with the levels in plasma or in blood. So yeah, it was very cool and very interesting, and I think that's an opening for the future, right?

It was very promising, and then I think the other talk that I like the most, and it's because I'm doing very similar things, it was the last one on the fluid biomarkers session and it was by Rowan Saloner and he's at UCSF and they've done a broad proteomics study in CSF from the all FTD cohort. Actually, I had a poster on a very similar proteomics study in GENFI. So, we've been doing this work in parallel for a couple of years and we keep bumping into the conferences presenting posters or talks.

So, it was really cool to see the update, how they progressed in the analysis, the type of analysis that they have done because it's quite different to what they have approached the data in a different way. So yeah, it was very cool because they basically looked at these proteomic changes addressing the questions of can they prevent, or can they predict the progression, and can they tell us a little bit more about the cognitive decline of it? So, I think it was a very interesting way of approaching this proteomic data and integrating it with the different aspects of the disorder.

Dr Anna Volkmer:

It sounds incredibly complex.

Dr Aitana Sogorb Esteve:

Well for me, sometimes I really enjoy these talks, but then when I see it on the clinical, for me it's kind of very difficult to follow because I'm not used to the terminology or all these type of analysis. So then for me that looks complicated.

Dr Anna Volkmer:

So, this is maybe a silly question, but so the finger prick blood tests, would that be something you could utilise one day in the future to get your samples?

Dr Aitana Sogorb Esteve:

Yes, definitely. So, I don't think it will be of use for discovery biomarkers or more robust analysis, but I think it will be very useful for someone who is in a clinical trial, and they have to monitor this person, maybe take samples every week or every second day. They can just do it from home. So, you kind of save them the trip to the hospital or the GP to draw blood or whatever. So, they will just be able to do it at home, and the good thing about these blood cards is that you dry them, you don't have to store them in the fridge or anything and you mail them as in Royal Mail. So yes, it's a very good advancement.

Dr Anna Volkmer:

Why could you not use that type of blood sample? Is it too small?

Dr Aitana Sogorb Esteve:

Well, I think it depends on what you want to measure in the end, but I think it might be for discovery studies, it might not be in the optimal condition, optimal storage, and maybe it might be too low volume to be able to do more kind of proteomics or exploratory studies, but once a biomarker is defined and it's kind of validated, you don't need that much amount of sample. So, a blood card will be completely fine, yeah.

Dr Anna Volkmer:

Wow, so maybe in 10 years time you could use it when it's done even better or something.

Dr Aitana Sogorb Esteve:

Yeah.

Dr Anna Volkmer:

Martyna, you were going to say something.

Dr Martyna Matuszyk:

Yeah, I thought that was great. The potential application of the finger prick is amazing, so I'm glad that you mentioned it because I think it was on the first day it was a panel discussion about the barriers to accessing clinical trials for people affected by FTD and it was travel that was the biggest issue and to remaining on the clinical trial and accessing a clinical trial.

So, if there is something that can be done to minimise that travel and something that people can do at home, that's amazing. I think that's just going to speed up clinical trials in general, but I did also like that last talk that you mentioned because I think it used a SomaLogic platform and I've heard about this back in the day when I was a researcher myself, we used it a little bit, so that's like scanning thousands and thousands of proteins all at once. So, I think that's a really cool approach to doing things like very next generation I thought, but yeah, no, it was great. That session was amazing, but I am very not into fluid biomarker machinery or methods, so it was a very interesting but science heavy session. It was very good to hear all the advancements in that area.

Dr Anna Volkmer:

I was actually on that panel about trials that you mentioned.

Dr Martyna Matuszyk:

Oh yes, yes you were.

Dr Anna Volkmer:

I was, which was quite nerve wracking because I had a platform presentation and then I was advised that I would be on that panel if that was okay with me, and obviously I wasn't going to not be on that panel because it was super exciting to be on a panel, but it was a really interesting panel talking about the barriers to people participating on in trials and I felt like it was really, what's the word? It was a heterogeneous panel, so we got a huge range of barriers basically. We talked about so many things, everything from retention like you say, because of travel, we had someone who is from a genetic family with FTD who a carrier is themselves talking about how it felt to be in a family and how they get treated.

She felt she got treated and her family got treated in trials. We had a trial, I think it was a trial manager, was she a trial manager? Speaking about barriers and then obviously we had Jonathan Rohrer from GENFI talking about how to participate in trials and the more, I guess he was talking lots of things from everything from identifying people to recruitment, to tech, to advancements, and then there was somebody from drug from pharma, which I thought was useful talking about what their desire is to do and then me getting a word in edgeways right at the end because I thought they weren't going to let me speak and I wanted to emphasise that actually despite all the work on pharma trials, essentially the cure is a really long way off.

At the minute we're going to be extending people's lives and even in a great scenario, I think even in a best say case scenario one day in the future we might be halting symptoms once they start, in which case people will be living with cognitive and linguistic difficulties. So, I was trying to encourage people to think a bit or the trialistic to think about integrating non-pharmacological interventions into trials, which was really great. Then a couple of neurologists approached me afterwards and said, "Oh, wouldn't it be great if we did a trial where you had pharma arm, like you had the intervention arm from a pharma side, the pharma plus the non-pharmacological intervention together to see what the difference might be. So, I can imagine in 10 years time if we're sat at ISFTD, let's hope we're talking about that type of trial model, trial design.

Dr Martyna Matuszyk:

Yeah, I thought it was a great panel, very informative, great to have all the different voices there from all the different approaches to trials, and then for me it was great to hear from Jonathan Roher about how, I think it was a few meetings ago or the last meeting that was there. There wasn't even a clinical trial session at that meeting, and then to come so far to have a dedicated panel and dedicated session and posters on clinical trials in this space is an amazing advancement that was very hopeful, I think.

Dr Anna Volkmer:

Hope is the thing I hear most from people. They say to me, everyone involved in research and clinical work, people have regularly told me this, they say we want you to help us manage our hope. So, we have hope but not too much hope, and I think that session was about hope, wasn't it? And I think it will help all of us talk to the people we are working with and think about what hope looks like. Go on Aitana.

Dr Aitana Sogorb Esteve:

No, I was going to say that I really liked that they included a participant in the panel because we have in this conference always like maybe the introductory talk in which we are all crying. I mean hearing from Emma Willis was really kind of moving, but then we just go into the science and then we kind of forget about the first day somehow, and I think it was very good that they included that in the panel discussion as in okay, I'm communicating with you, but also listening and answering your questions. It was this kind of two-way conversation with someone who is actually at the other side of it. So, I thought that was a great idea to have and I really enjoyed the session very much even though I'm not that in clinical trials, but that one was very good.

Dr Anna Volkmer:

I think it reminded us why we were there.

Dr Aitana Sogorb Esteve:

Yeah.

Dr Anna Volkmer:

What was your favourite talk Martyna then, outside of the panel?

Dr Martyna Matuszyk:

I did like Michael Ward's plenary session a lot. I love cells just from my own background and that's what kept me in science for so long and that's what keeps me interested in research. I love stem cells even more, and then to hear about all of the different genetic mutations and how they interact on such molecular level, but to have the talk speak so clear as well, that was amazing. I thought it was great. It made me miss the lab a little bit more and that doesn't happen very often because I do love communications, but yeah, no, it was great and then hearing all about the cryptic exons and how we might one day develop targets for them in the clinic, that was very good and very hopeful that we have constantly more ideas about what to target in the disease and different levels of targeting. So more upstream, more downstream, but I also enjoyed some of the late breaking abstracts. So, I think there was one talk, and I forgot the name now. Rosa-

Dr Aitana Sogorb Esteve:

Ruther Makers.

Dr Martyna Matuszyk:

Yes, thank you.

Dr Anna Volkmer:

She was the last day, wasn't she?

Dr Martyna Matuszyk:

Yeah, it was the last day, and it was talking about the discovery of a new potential. Yeah, it was amazing to see the progression of how people do those kind of studies and design them and how they look for these data sets and how they develop all of this methodology to find a new genetic risk factor because ultimately those are the mechanisms of the disease potentially, and it was great to see, it was very interesting.

Dr Aitana Sogorb Esteve:

I think she also explained it so well and so clear. She's such a great speaker as well and so I really liked that at the end of the day she just says, "Okay, we have to take this as in we still need to investigate a lot more. We still need to understand, but this is something that might be so as in not being over excited about it." But just being very realistic to what we are looking at, so I think it was very good.

Dr Anna Volkmer:

Speaking of the last day, the plenary session on the last day, Anka [inaudible 00:31:35], I mean she spoke about so much in half an hour, but I was a bit blown away by her work on the skin cells.

Dr Aitana Sogorb Esteve:

Yes, I was thinking about that as well, yeah.

Dr Anna Volkmer:

And she can see the proteinopathy in those cells, phenomenal, and I think what was so interesting is that to me as a non-cell person that seems almost unfeasible, but she was then explaining in very clear terms how complex that process was and then offering to share her methodology with everybody and I think that's what the spirit of this conference is about. It's about collaboration and networking, and so I was going to flag, the other session that I really enjoyed was the very first session. So, they foregrounded linguistic diversity, and it came up throughout of course because it's influential in all of our talks and so it should be nowadays, but I thought that was really fascinating to think about how we've got these diagnostic criteria for FTD.

But so many, particularly the language variants of semantic and non-fluent are completely dependent on how people present linguistically, be it that they have problems with word meaning and a surface dyslexia for semantic variant or and that they have apraxia and agrammatism for non-fluent, but that's completely based on English and some of the stuff they were presenting and educating us about because at the audience, so the whole conference is in English, the majority of the attendees are from western countries, and I think that was such a really important session to remind us that actually these disorders present differently. So, I just find it fascinating. So, things like when they talk about agrammatism being almost impossible to diagnose across Chinese and Japanese languages, and in Italian for example, they talk about the dip how agrammatism presents very differently in Italian.

And then they were talking about how one of the speakers Boon Lee, she spoke in Lille last time, I think she blew everybody away in Lille. I think she did it again and she gave us some education on Chinese orthography and how Chinese orthography can be both semantic and phonetic and how that then is affected by semantic impairment. Whereas in English, all our orthography is phonetic. So, we only see these surface dyslexia whereas in people make errors in how they spell irregular words. So, they spell yacht like Y-O-T, or they might say if they read yacht, they'd say yakt rather than yacht.

Whereas that's so different if you've got a word picture-y word essentially. I found that very exciting and I finally include network. So Boon Lee started this network only a couple of years ago trying to get a linguistic sample. So she started it with a gentleman called Alfredo from whose surname I can't remember, but I know he's from South America, one of the South American countries and they've got lots and lots of researchers on board to share speech and language samples from across the world, and so we can start developing assessments, tools that could act as outcome measures that could be cross linguistic, which also I think will help admit people to research studies. So, we all know that we are comparing apples with apples and not apples with pears across any type of research study, and I think that's pretty exciting as well.

Dr Martyna Matuszyk:

Yeah, I agree. I think all of the diversity and cultural differences that were talked at the conference, it was very good to see and very interesting to see and I think there was one talk right at the beginning of the conference that was even talking about the Japanese language and how that differs from English language and the brain regions that are differently affected. It was incredible to see how the brain is so complex and processes things differently, but then there was also a plenary session about the social cognition, I think it was by Savana Alladi.

Dr Anna Volkmer:

Was it good?

Dr Martyna Matuszyk:

Yeah, it was great and it was talking about cognitive and written tests that are often in English, but we need to have them as culturally relevant as possible so they can reach more people and I think there was talks about bilingualism and how people may learn different words in different languages, so they might respond to those naming tests in both languages and it's going to be very different for each culture and also the common pictures might be very different for each culture. So that is something that needs to be talked about, and there was a lot of also, I know we were in Amsterdam, but there were a lot of talks that were adapting the English tests to Dutch language to capture the nuances of the language, which is really important. We can't have everything in English, not everyone is English speaking. So yeah, that was great. It was very interesting.

Dr Anna Volkmer:

But there is so much process around adaptation. We adapt a lot of speech and language assessments but also interventions and that takes so much. People think it's a straight translation, but it really genuinely isn't because it is about cultural context, what's important, what people use and talk about, what they're allowed to talk about? I think that might be, not allowed, but conversation and interaction is different across cultures in terms of what we talk about, the types of questions we ask for example, I can imagine that expanding a bit more as we move forward.

Dr Aitana Sogorb Esteve:

Yeah, I think that the plenary, I think it was it on the Friday from Subama Aladdi I think. I was so surprised because you never think about it, but she was showing this naming test and how a crown for example does not exist, and then she was showing the pictures of the different kind of, I don't know how is that called? But what they are, maybe some of them, they will not interpret what a crown is because that's not something that exists in the culture and also how the animals were and all of that, and I found that so interesting because sometimes in the lab when we discuss about the different types of aphasias as well, I always say that well, I'm Spanish and in Spanish we pronounce, and actually I remember one of the poster blitz presenters was talking about that and she said Spanish is a transparent language as in we pronounce as it's written, so we don't have a different pronunciation. So, there are different ways that we need to approach how we evaluate all these functions.

Dr Anna Volkmer:

There was actually a poster by a Spanish speech and language therapist who is also talking about, so she's bilingual and all the patients she works with our Catalan Spanish bilingual and how-

Dr Aitana Sogorb Esteve:

Oh, was it Nuria?

Dr Anna Volkmer:

Nuria, she's a good friend of mine, Nuria Montague and she's done some awesome work with Stephanie Grasso who also is in states in Texas looking at again, so she works across Mexico and America and they're doing a big trial in Spain actually looking at delivering interventions with bilingual people, and it's so relevant because in my clinical life I work in London and most of my patients are really diverse and I think that's really makes it really valid. It's really important. So, all these tests. Just going back, so people kept talking about picture descriptions, which I thought was great. So we weren't just talking about single words as a tool for diagnosis and interventions and trials, but then we kept showing the cookie theft picture, which is essentially a standard picture we use where a woman is washing up and looking out into outer space looking a bit absent, and the children are stealing cookies and it's one from the 1950s and it's so socially I think we're all nodding as women, gosh, I hope I'm not depicted at washing up ever in a photo. It's not how I want to be depicted.

So just in terms of diversity and role, I think there's so many lenses to that, isn't there? It's so exciting, but actually I'm really pleased that it's the three of us are all women scientists who went to that conference who were here all talking about that conference because I felt like it was a really diverse conference actually. There were lots and lots of women there, people from lots of different countries despite it all being English, that was exciting.

I have one final question. Did you come away with any new ideas or learn anything surprising? So, one each, what did you learn? A new idea or something surprising that you're going to use in your work.

Dr Martyna Matuszyk:

For me it was great to see all the fundamental research for FTD causes. So, the protein machinery, dysfunction, all of the work that goes into understanding the mechanism of the disease and how everyone is super, what's the word, just super motivated and works really hard and puts a lot of effort into advancing the field. For me as a person from Alzheimer's society who we want to make sure that we are staying up to date with all the researchers and everyone around the world and in the space so that we know what is interesting to people to research what is important to research. I think it's really important for all the funders to understand the actual landscape of research that they are potentially funding.

So, I came out of it with so much new information about the clinical side of things. So much information about the diversity of FTD and the challenges of the research and challenges of the clinical trials landscape. So, I will be taking that away to our research team at Alzheimer's Society and I'm sure they'll be very excited to hit all about it. We took detailed notes so that we are all understanding of the FTD research landscape. So that was the main highlight of the conference for me, just understanding the landscape.

Dr Anna Volkmer:

Aitana.

Dr Aitana Sogorb Esteve:

Yeah, so actually I'm going to say two very quick. So, the first one was I really, I was shocked like you Anna of being able to detect TDP-43 in skin and I think that's kind of something very interesting and very important in terms of diagnosis. Maybe with a skin biopsy we will be able to see a lot of things. So I think that's something that I'm going to take, and the other thing that I really also liked about ISFTD is that we network a lot and it's a small enough but not that small conference for all of us working in the same disease because you go to other, like AIC for example, which is amazing, but there are so many people that it is really difficult to kind find people you can collaborate and ISFTD is perfect for that. So that was also very good.

Dr Anna Volkmer:

I'm going to segue off that because that's exactly what I'm going to say. So, four ISFTDs ago I went and there were three speech and language therapists there and this ISFTD, I think there were close to 30 or 40 of us and from around the world, and one of the things that we were able to do is have our own side meeting. There were a few side meetings going on and so it's so exciting to see all these networks happening and we don't have this, we have just set up a network for speech and language researchers and I think it's really motivating because lots of the neurologists and the other researchers were saying, "Yeah, you guys need to keep collaborating and joining together and get big data."

So, I think you heard it here first. We are going to ask Speech and Language Therapy International Network are planning to share more data and planning to develop patient reported outcome measures that are important to people across the world so that transcend linguistic, I guess specific linguistic concepts, but more about what people feel are important about what they want to change from their interventions. So, it really fuelled the excitement. I also came away; I don't know if you went to the conference dinner. There was a professor who I've never seen him before and he DJ-ed. So, I've suddenly got a newfound respect because he did a brilliant. He DJ-ed for five hours. I was like, "Wow."

Dr Martyna Matuszyk:

But on that note, can we talk about the opening of the conference? How amazing was that?

Dr Anna Volkmer:

Yeah.

Dr Martyna Matuszyk:

It was incredible.

Dr Anna Volkmer:

The listeners, the opening of the conference started with a beautiful orchestra playing the Bolero and it was beautiful orchestra and they were playing amazingly, and then suddenly it was obviously planned, but there was an interruption and from the back of the auditorium, there was some brass and what's it called, drummers, there's a special musical term for that isn't there? And they came walking through the audience and everyone was dancing. I saw Marcel Mesolin dancing just in case, it was very exciting.

Now I'm afraid that's all we've got time for today. So, if you just can't get enough of this topic, visit the Dementia Researcher website where you'll find a full transcript of our conversation, biographies on our guests and myself, blogs and much more on the topic. I'd like to thank our incredible guests, Dr. Aitana Sogorb Esteve and Dr. Martyna Matuszyk. I'm going to say your surname, Matuszyk, and I'm Anna Volkmer and you've been listening to the Dementia Researcher podcast. Thanks everybody, bye.

Dr Martyna Matuszyk:

Thank you, bye.

Voice Over:

The Dementia Researcher podcast was brought to you by University College London with generous funding from the UK National Institute for Health Research, Alzheimer's Research UK, Alzheimer's Society, Alzheimer's Association, and Race Against Dementia. Please subscribe, leave us a review, and register on our website for full access to all our great resources. Dementiaresearcher.nihr.ac.uk.