Latest / Dementia Researcher Vodcast / International Symposium on ALS / MND Roundup 2023

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International Symposium on ALS / MND Roundup 2023 · Dementia Researcher Vodcast

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  - [Announcer] "The Dementia Researcher" podcast,
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  talking careers, research, conference highlights,
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  and so much more.
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  - Hello, and welcome to the "Dementia Researcher" podcast.
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  Today we're in Basel in Switzerland
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  to bring you the highlights
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  from the 34th International Symposium on ALS and MND.
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  (down tempo music)
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  I am Alys Griffiths, and I'm an NIHR Senior Research Fellow
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  at the University of Sheffield.
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  I'm delighted to be guest hosting this show.
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  Let me start with today's fun fact.
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  Basel is a cultural and pharmaceutical hub
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  at the crossroads of Switzerland, France, and Germany,
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  boasting the world's oldest art collection
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  and being the home to the headquarters of pharma giant,
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  all great reasons why it makes a wonderful home
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  for this year's symposium.
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  As ever in these conference highlight shows,
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  I'm joined by researchers who are gonna share
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  their event highlights to provide a snapshot
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  of what's been talked about this week.
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  Let's meet the guests.
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  (down tempo music)
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  With me today is Alicia Northall, Heather Marriott,
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  Amber Sewell-Green, and Philip McGoldrick.
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  Let's start with some quick introductions.
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  Alicia, could you tell us about yourself, please?
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  - Hi, I'm Alicia.
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  I'm from the University of Oxford.
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  I joined as a postdoc about six months ago,
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  and I work on neuroimaging in ALS,
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  trying to find new biomarkers.
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  - [Alys] Heather, could you go next?
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  - Yup, I'm a third year PhD student
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  at King's College London, and I study,
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  I use multiomics in ALS and MND
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  to try and identify subgroups of patients
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  which might be beneficial for clinical trial recruitment.
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  - Amber, you've come the furthest.
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  Could you introduce yourself, please?
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  - Hi, I'm Amber.
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  I'm from the University of Queensland,
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  all the way from Australia.
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  I'm a first-year PhD student and also a dietitian
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  with a background in neuroscience.
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  I'm looking to improve nutrition care guidelines
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  with a focus on energy and fats in Motor Neuron Disease.
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  - [Alys] And Philip.
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  - Hey, I'm Philip McGoldrick.
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  I'm a research associate at the University of Toronto,
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  funded by ALS Canada and Brain Canada.
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  I work on nucleosides possibly transport in ALS.
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  - Thank you. So I know this is the first time
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  for all of you joining on the podcast,
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  so thank you for joining us.
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  Let's get to some highlights.
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  (down tempo music)
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  So I'm sure listeners already know the format,
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  but what we do is go around the room a couple of times
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  and each person shares one of their favourite talks
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  and posters and then we'll just have a chat about them.
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  But before we get going, I wanted to give you all the chance
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  to talk about any talks you've given this week.
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  Has anyone been presenting?
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  - Only a poster. - [Alys] Yeah.
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  - I can discuss my colleague that did present
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  'cause I know enough about her work,
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  so I'm happy to share that.
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  My colleague Jeryn Chang,
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  she's been doing really amazing work
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  with MRI images of the brain.
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  She started on hypothalamic volume,
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  a little part of the brain that we know is involved
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  with metabolism and appetite.
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  And then they actually showed pictures of non-food items
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  and low-calorie and high-calorie food items in controls
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  in ALS patients in a fed and fasted state.
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  So I guess the first part of her research showed
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  that there's a bit of background showing the hypothalamus
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  may shrink in people with Motor Neuron Disease,
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  but they found a curve, so the lowest and the highest BMIs,
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  there was a difference, but the middle BMI, not so much,
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  so it's not quite so straightforward as we think.
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  But I think the main things that she found was
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  in the fed and fasted state,
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  the high-calorie foods had a lot more lighting up,
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  particularly in the right temporal pole
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  and in the cerebellum for controls,
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  but it didn't seem to be so for MND patients.
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  So it seems to be maybe reduced activation
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  or a bit of a dulling in this.
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  And there is some literature kind of showing
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  that these regions of the brain are associated with food
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  and reward and maybe social benefits.
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  So just starts to highlight I guess,
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  areas of the brain we don't think about with appetite
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  that might be affected in people with MND.
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  So I think her research is gonna be really exciting,
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  and I'm very proud of her.
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  She did a wonderful job.
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  - [Alys] Great, so I guess, what would that mean
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  for people we're seeing in clinic?
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  - So I guess it would mean targeted approaches
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  that if people look at appetite differently,
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  maybe they may not be driven by memories.
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  Obviously, I can't make exact to say causation,
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  so let me put a little bit of a marker there,
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  but I see it as we might know how to approach
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  and have a more individualised approach.
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  Especially myself being a clinician,
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  if we know there's areas of the brain that may behave
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  a bit differently compared to healthy populations,
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  we may address how we approach encouraging people
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  with weight loss 'cause what would work with other people
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  may not work in MND populations, so.
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  Or just explain how they feel about food, if that's changed.
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  In other cases, we know that there's some taste changes,
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  food tastes better or worse or there's decreased appetite,
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  and we may be able to provide a bit of an explanation why,
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  which I think is always nice.
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  - Thank you. Philip, you said you did a poster?
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  - Yeah, yeah, I had a poster on the first day.
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  So my work is on C9RO72,
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  which is the most common cause of ALS and FTD.
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  I work on the loss of function of the protein
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  because it's a fairly understudied area.
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  So what I'm interested in is the mechanisms,
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  that loss of function,
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  the effect that it has on cellular mechanisms.
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  So I've been looking at nucleocytoplasmic transport
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  because we know the gain of function toxicities
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  affect nucleosides plasmic transport.
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  I want to see if they could also be affected
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  by loss of function.
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  So we have some overlap with some of the work
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  that was presented here and we're quite excited about.
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  - Did you get any good conversations at your poster?
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  - I was talking for about two hours,
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  (Amanda chuckling)
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  only to about four people,
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  so the people who liked it liked it.
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  - [Alys] Great. Alicia?
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  - I didn't have a poster or a talk, so I joined my group
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  around the time of the submission deadline.
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  So it's actually nice to be a fly on the wall
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  for the first time at conference
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  and just be able to soak it all in
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  and ask lots of questions.
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  - [Alys] And Heather? - Yeah, so I presented
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  a poster on the genetic analysis of NEFH,
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  neurofilament heavy chain gene, in sporadic ALS.
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  And the reason that we did this is because NEFH
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  is included a lot of genetic screening panels,
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  but the actual genetic mutations and variants
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  that we find in NEFH haven't been robustly associated
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  with ALS risk.
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  So we wanted to try and characterise that further
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  and actually see if variants do modify ALS risk
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  by performing a large scale screening analysis
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  of the project of mine, ALS sequencing cohort.
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  - [Alys] And did you have any good conversations?
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  - Yeah, there was a couple of people that were interested,
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  although they were wet lab people.
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  and I'm a pure, purely, pure bio of petition.
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  I couldn't really answer their questions
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  that well, but (laughs).
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  - That's the fear isn't it? - Yeah, yeah.
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  - [Alys] So they, they're doing
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  similar work from a different angle.
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  - Yeah, so, so we confirmed
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  previous reports in the literature which say that
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  variants in a specific domain of NEFH, the tail domain,
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  which affects phosphorylation of the protein
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  that is found in the serum in CSF,
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  they actually said that
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  perhaps the mutations are driving the phosphorylation.
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  So they're really interested in
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  tackling it from a different approach,
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  like introducing mutations into in vitro models.
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  So it's quite nice to sort of
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  gain a perspective from the other side.
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  - Great. So shall we move on
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  to everybody's highlights?
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  Philip, do you wanna go first?
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  - Yeah, my first highlight was a talk by
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  Gary Armstrong from McGill University in Montreal in Canada.
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  And Gary's made, he's used CRISPR to
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  modify endogenous Zebra fish TDP43.
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  So this is a much more physiological model of disease
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  and it aids the fish and perform lots of behavioural
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  and imaging answers.
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  And I think it's really important
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  because then this is a physiological model
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  in a small animal model,
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  which is much more tractable for other experiments.
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  I think it could be very, very powerful.
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  - And what was it you enjoyed about his presentation?
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  - Everything. It was,
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  I think it was really good characterization.
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  Yeah, really good characterization and really good,
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  it has a lot, would have a lot of power
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  and a lot of translatability for different studies.
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  - Great. Amber, do you wanna
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  tell us about your first highlight?
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  - Yeah, I'm, I'm gonna start a little bit broad
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  and I guess something I was surprised
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  and really enjoyed is the focus on quality of life
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  and the actual lived experience of the disease.
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  I think there was a really huge representation
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  of studies on psychology,
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  studies on quality of life,
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  studies on nutrition,
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  studies on allied health
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  that span through the posters
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  and through the talks.
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  In particular, there were a few on ACT therapy
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  that were really interesting.
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  There was also one by Eneida Mioshi
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  and she talked about just how to manage behavioural changes.
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  'Cause I guess we see, you know, maybe 15% of people
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  with ALS will have that FTD spectrum,
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  but then still more,
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  around 35%, will actually still present
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  with those behavioural changes of things like apathy.
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  And if we can understand that as clinicians
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  and then actually relay that to the carers
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  that know your partner or your child
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  or whoever it may be, is not depressed.
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  They're just struggling with motivation
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  that can actually really change the course of their, of
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  how they behave and how they interact.
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  So I think that was a really,
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  presented some really powerful
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  guides for carers and clinicians
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  and for clinicians to share with carers.
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  - [Alys] Yeah. Is that the mind toolkit?
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  - Mind toolkit? Yeah, so I'm really excited
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  and I think in what I've looked at and
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  and seen as a clinician is there really is
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  that lack of standardisation.
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  So at seeing those toolkits come out
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  and actually being looking forward to a future
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  where there are online tools for clinicians
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  and carers is something I think is really exciting.
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  - [Alys] Great. So you've been kind of
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  looking at things from a, how will this be helpful-
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  - Yeah
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  - [Alys] as a clinician and researcher?
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  - Yeah, we run research,
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  like, I'm a clinician myself
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  but we also run research clinics so we see a lot
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  of the human side of it four days a week.
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  So really you get that hands-on patient and care experience.
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  So I'm always kind of keeping that in the back of my mind
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  as yeah, how to better standardise it, how
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  to improve quality of care.
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  - Great. Thank you. Lucia?
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  - So I think most of my highlights are probably from the
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  neuroimaging sessions,
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  but I think I'd like to start with something that was
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  not exactly in my area.
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  So the talk by Haley Cropper,
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  hope I said the name right,
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  from the University of Illinois,
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  which was focusing on the, well a couple of things
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  about how injury can perhaps predispose certain people
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  to develop MND.
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  And of course, not everyone who has injuries
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  develops MND, but she had a population of patients
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  who had been involved in exercise,
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  mostly high level exercise I think?
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  Hopefully didn't get that wrong.
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  And she looked at where they'd had injuries in the past
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  and changes in the the spinal cord, the vertebrae
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  and where the onset site of their disease was.
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  If they had had problem in the specific part
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  of the left leg and they had
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  the ALS onset site was
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  in the same place, which is something
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  I've always been interested in.
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  So it was really nice to look at the natural
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  history of those patients.
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  And she also had some great post-mortem data
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  and looking at where the disease may spread up
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  from the spinal cord up to the medulla.
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  That was my highlight.
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  - [Alys] That sounds really interesting.
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  So is she looking at specific types of sport or just?
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  - So I'm not sure exactly
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  but she had a sample of I think 18 patients
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  and eight with post-mortem.
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  I'm not sure if there are exclusively patients
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  who had a history of high level exercise
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  or it just happened to be the case that a lot
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  of them were involved in sports.
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  But I think it's one of those things that's
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  so complicated when we think of lifestyle factors
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  like diet and exercise, but they're understudied
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  and I think that a lot of patients
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  and their caregivers are just interested
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  in risk of exercise but things like that.
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  - [Alys] Yeah and I think especially
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  with there being kind of some high profile people
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  in the media who've got sports backgrounds
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  that kind of draws attention
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  to that kind of work, doesn't it?
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  - Yeah, definitely.
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  Yeah, there's lots of people
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  who are doing those challenges
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  while they've still got a motor function left.
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  Really inspiring, I think, to the whole community
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  - Heather.
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  - Yeah, so one
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  of my favourite highlights was from the genetics
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  and genomics session at day one.
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  And I think one of my favourite talks
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  was that was by Yun Wang, at UMC Utrecht
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  and she developed a computational tool called SpliPath,
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  which can identify intronic splice site hotspots
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  in the whole genome.
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  So she applied it to paired RNA
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  and DNA sequencing data of people with ALS
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  and she actually found that, she actually found mutations,
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  splice site mutations in KIF5A,
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  which have been previously reported.
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  But she also found some promising
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  mutations in other genes as well.
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  So I think she might extend it genome wide
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  and then hopefully she might identify some new
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  genes which you can't really get in the genome
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  because it, this is in the non-coding genome.
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  It's not in the coding genome that we usually get
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  with like her exome sequencing.
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  - [Alys] So for those of us not in genetics-
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  - Yes
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  - [Alys] where does that go next?
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  - Ooh. Okay. (laughs)
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  Okay. So as in, in terms of if her gene
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  has been identified, then what happens?
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  - [Alys] So, what do you think she's gonna do
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  next to take this forward?
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  - Ah, okay.
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  So, I think what she was planning to do,
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  and I don't know if I'm wrong on this,
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  but she's planning to extend, extend it genome wide.
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  So she was initially looking in KIF5A
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  because they already have the splice site mutations just
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  to see if the tool is actually capable of picking it up.
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  But she's gonna do it genome wide
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  and then from there she finds anything
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  and I think they might be functionally validating it
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  and then screening in people, large scale populations
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  to then see if it can be a candidate gene.
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  - Anybody else got a highlight that they'd like to share?
• 14:38
  - Yeah, there was a really wonderful talk
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  in the kind of cell biology
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  in the afternoon of the first day by Alex Cammack.
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  And that was talking about lipid pathways or fat pathways
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  and particularly in C9 variants, which
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  that was particularly interesting again
• 14:56
  'cause I think there's that Dementia ALS crossover
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  and that were talking about the basically
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  four genes that are linked to lower levels
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  of unsaturated fatty acids.
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  Your unsaturated fatty acids, if we think
• 15:10
  of saturated is usually something
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  that's solid at room temperature,
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  unsaturated the ones that's liquid.
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  Our unsaturateds, like our fish or
• 15:18
  in the monos, things like olive oils,
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  but more of those kind of plant and fish derived oils.
• 15:24
  And they were a huge part of the brain.
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  And I think what I found exciting is it started
• 15:28
  with drosophila, or your fly,
• 15:29
  then it went to mouse models,
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  but then it was also found in IPSC lines,
• 15:34
  which are lines when we take cells
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  and take them right back to the start
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  and then can reprogram them as motor neurons.
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  Some really cool science and showed that, yeah there,
• 15:44
  that there was a reduction in these
• 15:45
  and it was linked to poor prognosis.
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  And then in post-mortem samples.
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  So when people kindly donate brains for example,
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  or spinal cords for research, we found the same,
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  like these lower levels and they provided some,
• 15:59
  or he talked about some treatment options where they
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  provided ASOs, where you can treat this
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  and kind of reverse it and it actually helped
• 16:06
  and rescued the cells.
• 16:08
  So I'm interested in that from my own perspective.
• 16:11
  I had a poster here as well,
• 16:13
  but I'm looking at, you know,
• 16:14
  if providing people just enough
• 16:16
  energy can prevent weight loss,
• 16:18
  'cause anyone that, contrary to popular belief,
• 16:20
  any weight loss, even if someone's a bigger body size is
• 16:23
  considered with shorter life expectancy.
• 16:25
  But it seems to be that maybe
• 16:27
  it's a bit more complicated than just calories
• 16:29
  and the type of energy, whether it's coming from fat,
• 16:32
  seems to be a really big part of the literature
• 16:34
  and I think there's a lot
• 16:35
  of compounding evidence that there's a role in these.
• 16:37
  So it helps a little bit more
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  step towards, maybe a bit more
• 16:40
  precise nutrition care guidelines
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  and also something patients can do.
• 16:45
  If we've got some guidelines that are a bit clearer,
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  then it kind of takes the power back in hands.
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  So I was excited about that.
• 16:51
  - [Alys] So is that something we don't know much about?
• 16:53
  - Yeah - Sorry, I was gonna say,
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  I thought it was really cool as well.
• 16:56
  - [Alys] Yeah. I'd love to hear your thoughts.
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  - 'Cause one of their ways to treat the problem
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  with the polyunsaturated fats
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  was they used a plant enzyme
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  that doesn't exist in humans.
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  - [Alys] Oh!
• 17:08
  - So they expressed that in their IPS cells
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  and it rescued the phenotypes.
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  So it's really cool biology that, you know,
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  taking the gene from another organism that humans don't have
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  and then using it for human health is really how,
• 17:21
  - How did they select that plant enzyme?
• 17:25
  You know, how did they select that plant enzyme as the...
• 17:28
  - I think they'd looked at,
• 17:32
  they didn't say specifically, I would've guess
• 17:33
  that they looked at, you know, this method of
• 17:36
  the pathways involved in polyunsaturated fat production
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  aren't common in humans,
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  but they know it's common in plants
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  and another organism that can't, maybe sea elegans?
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  - A lot of plants, you know, a lot
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  of our oils are plant derived
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  so they've got their own biological processes
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  and then yeah, testing that in an organism
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  that's quite simple to kind of then verify it.
• 17:55
  But-
• 17:56
  - Really nice. Yeah,
• 17:57
  it was some really interesting science
• 17:58
  and kind of built its way back to humans,
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  which was really interesting
• 18:01
  'cause a lot of these you go, oh
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  but is it clinically relevant?
• 18:04
  And then it was nice that they kind of built back to that.
• 18:06
  - Yep. And then one of the phenotypes that they rescued,
• 18:09
  which is ALS relevant, was vulnerability
• 18:12
  to glutamate, which can cause excess toxicity.
• 18:14
  So then this plant enzyme was beneficial in an ALS context,
• 18:19
  not just in the look and it's really, really nice.
• 18:21
  - Exactly.
• 18:22
  And we've seen that theme of cortical hyper excitability
• 18:25
  and that perhaps that's potentially maybe one
• 18:27
  of the starting points that the region of the brain
• 18:29
  that might have that hyper excitability
• 18:31
  or just, you know, the neurons are over firing, then might
• 18:34
  relate to the map of whatever body part it is.
• 18:36
  And that might be the area of the body
• 18:38
  that first gets symptoms and spreads.
• 18:39
  So yeah, really exciting.
• 18:42
  - So it feels like that's got potentially
• 18:43
  quite exciting trajectory forward?
• 18:45
  - Yep. - I think so, yeah.
• 18:48
  I think it's got a lot of promise.
• 18:50
  - I think the cortical hyper excitability thing, you know,
• 18:53
  it's a major feature of ALS
• 18:55
  but it comes up in a lot of different fields
• 18:56
  because it, for neuro imaging, it's really important for us
• 18:58
  and can be measured using TMS.
• 19:01
  But my colleague, Michael Trubshaw, presented his work today
• 19:04
  using magnetoencephalography.
• 19:07
  It's a different kind of imaging technique,
• 19:09
  like EG, but with better spatial resolution.
• 19:12
  And he was showing that this replicated a lot
• 19:16
  of early results within ALS,
• 19:19
  where beta power is decreased,
• 19:21
  which is the oscillation related to motor function,
• 19:24
  but also showing data from asymptomatic carriers
• 19:29
  of C9 and SOD1 mutations
• 19:31
  and showing that cortical excitability
• 19:33
  is increased in those patients
• 19:35
  who are symptom free entirely.
• 19:37
  - Yeah.
• 19:38
  - So I think it is one of the earliest
• 19:40
  markers of the disease.
• 19:42
  - [Amber] That something is going on.
• 19:43
  Yeah- - Yeah.
• 19:43
  And it's linked to all the different fields, you know,
• 19:46
  it's not just neuroimaging, it seems to be kind
• 19:49
  of cropping up.
• 19:51
  - [Amber] Yeah, absolutely.
• 19:53
  - [Alys] Great. Heather, another highlight for me?
• 19:56
  - I saw a really nice poster about one
• 19:58
  of the patient fellows, Rick Kells.
• 20:02
  And what he was doing
• 20:04
  is he creates artwork online
• 20:08
  using several different tools
• 20:11
  and what he's trying to do is
• 20:15
  get lay summaries that the University of Sheffield have done
• 20:17
  with readable research
• 20:20
  and then he just transforms it into a picture.
• 20:23
  And it was amazing to see all of the pictures
• 20:25
  and he was walking through them all.
• 20:28
  It was so good, honestly.
• 20:30
  - [Alys] Can you give us an example of
• 20:32
  what one looked like?
• 20:33
  Can you remember any of them? - Oh.
• 20:35
  There was so many, but there was,
• 20:38
  so there was one,
• 20:40
  this was based on his own experience with MND.
• 20:44
  Yeah, it was a beautiful garden. Loads of butterflies.
• 20:46
  Loads of plants because he was like, oh the journey,
• 20:50
  you never know where it's gonna take you.
• 20:52
  The the journey's beautiful.
• 20:53
  My wife's walking it through with me
• 20:56
  and he says, you're just getting a different
• 20:58
  perspective online.
• 21:00
  And that's one.
• 21:01
  But then a scientific one also,
• 21:03
  he was reading something about peri-vascular fibroblasts
• 21:10
  and how they can be altered in ALS.
• 21:14
  So what he did was he actually drew,
• 21:18
  he was drawing the whole parasite blood-brain barrier.
• 21:21
  He got a lovely little picture
• 21:23
  but he didn't look scientific at all.
• 21:26
  It was, it was, yeah, it was so good. Yeah.
• 21:28
  - And I guess great seeing posters
• 21:30
  by people living with MND as well.
• 21:32
  - [Heather] Yeah.
• 21:35
  - Well, and I thought it was really nice as well,
• 21:37
  seeing the patient fellows with their
• 21:39
  beautiful scarves. - Yeah. Yeah.
• 21:41
  I thought it was like a really light,
• 21:42
  nice, non-stigmatizing way of saying,
• 21:45
  this is how I'm identifying here.
• 21:46
  - [Heather] Yeah.
• 21:48
  - Did anyone else see a poster by someone living with MND
• 21:51
  or that had a contribution for someone with MND?
• 21:54
  - I saw a few, but I don't think I give any concrete
• 21:56
  examples.
• 21:57
  - Yeah. (laughs)
• 21:58
  - So many posters.
• 21:59
  - It is, it gets a little, yeah, a lot
• 22:00
  that your brain is- - [Alys} So many posters.
• 22:02
  - I didn't see any posters by the patient advocates,
• 22:05
  but I spoke to a few of them
• 22:07
  and they're very, very impressive people.
• 22:09
  - Yeah.
• 22:10
  Their scientific knowledge was way
• 22:13
  beyond what I thought it was gonna be.
• 22:15
  It was very enlightening to talk to them.
• 22:16
  It was really enjoyable.
• 22:18
  - Also, they're so motivated.
• 22:19
  I mean the conference is exhausting even for the scientists
• 22:22
  where, you know, you wanna discuss all those tiny details
• 22:25
  with someone you meet at a poster session.
• 22:27
  - [Amber] Yeah.
• 22:28
  - But yeah, I'm, you know, you're exhausted throughout
• 22:30
  because it's a lot of work
• 22:31
  and the patients are so motivated.
• 22:33
  It's, it's inspiring.
• 22:37
  - I saw an interesting post that was presenting clinic data
• 22:40
  and it was really interesting 'cause this woman was from
• 22:43
  the States and she was saying would this work in the UK
• 22:45
  and it was like satisfaction cards
• 22:47
  that were given out at the ALS clinic.
• 22:50
  And she said it helps people know
• 22:51
  which your ALS clinic to go to.
• 22:53
  She was like, would that happen in the UK?
• 22:55
  I was like, well you could do your satisfaction survey
• 22:58
  but it's still the one you go into.
• 23:00
  (everyone laughs)
• 23:01
  But they'd done little like flyers
• 23:02
  for people to take away with them-
• 23:04
  - Oh!
• 23:05
  - so you could look at all the data online,
• 23:07
  which I've- - Oh, right.
• 23:08
  never thought of doing before.
• 23:09
  - [Philip] Yeah.
• 23:10
  But she was like, you just scan the QR code,
• 23:12
  gave me a flyer and off we went.
• 23:15
  - [Amber] Does the scan, does it, does the scan
• 23:16
  bring it to a server?
• 23:18
  - No, so it takes you to a website which highlight
• 23:21
  their survey findings for all the different clinics
• 23:24
  around the US. - Oh, Okay. Yeah.
• 23:25
  (everyone laughing)
• 23:28
  - I'm not good on it yet.
• 23:29
  - [Philip] So, it's like Yelp for clinics.
• 23:31
  - Yeah! But beautifully presented.
• 23:33
  - [Philip] Yeah.
• 23:34
  - And they had, she was like, oh we've got a graphic design
• 23:35
  team who helped us do this.
• 23:36
  And I thought very, very impressive.
• 23:41
  So we're gonna get kicked out the building in a few minutes
• 23:43
  so has anyone got one final highlight?
• 23:45
  - I did, like, I can't name the specific
• 23:48
  talk 'cause it's just come to mind. I didn't prepare,
• 23:50
  but I think it was on the first day, or the second day
• 23:53
  there was a focus on a clinical care session
• 23:55
  and there was a talk about non-specific caregivers.
• 23:58
  So not people who are trained or employed to be caregivers,
• 24:01
  but people in the home or colleagues, friends.
• 24:04
  They said it could be anyone, someone
• 24:05
  who regularly drives you to the hospital.
• 24:08
  But that was really amazing because they focused
• 24:09
  for a long time on the, you know, psychological stress
• 24:13
  and the implications of being a
• 24:14
  caregiver and how difficult that is.
• 24:16
  But also they finish
• 24:18
  with such a positive note about the benefits.
• 24:20
  So they ask all those non-specific caregivers
• 24:22
  to summarise their experiences.
• 24:25
  And it was really nice to see that,
• 24:26
  especially if it was someone in your family,
• 24:28
  you felt closer to them, you valued the time more with them.
• 24:31
  And it was nice to end on a positive note about MND.
• 24:37
  - Could I also add, in the final session, the prize won
• 24:41
  by Neil Schneider and his team, which was incredible
• 24:44
  for developing a FUS antisense oligonucleotide treatment.
• 24:50
  And we met one of the patients
• 24:51
  and they've been
• 24:54
  not declined in three years from a very aggressive form
• 24:57
  of ALS and it was very emotional, beautiful.
• 25:01
  It was amazing. - Yeah
• 25:04
  - And just as a bit of background,
• 25:04
  if viewers don't what that is,
• 25:06
  FUS is a very aggressive form
• 25:08
  that typically is juvenile or found in children.
• 25:11
  And death is usually within about a year, sadly.
• 25:14
  And he developed a treatment
• 25:16
  that he started on one patient
• 25:18
  and today we actually saw someone who'd actually improved
• 25:22
  and is still living three years later,
• 25:24
  which is phenomenal
• 25:26
  and something quite groundbreaking
• 25:27
  and I think gives a lot of hope.
• 25:29
  And I think this whole conference gives a lot of hope.
• 25:31
  'cause there are a lot of positive steps and
• 25:33
  and treatments that before we went,
• 25:35
  oh, there's no treatments. - Yeah
• 25:36
  I don't think I can confidently say now
• 25:38
  that there's no treatments in my talk anymore.
• 25:40
  So Yeah. - Yeah,
• 25:41
  - [Alicia] Yeah. You're so right.
• 25:43
  - That feels like a positive place to be.
• 25:45
  - [Amber] Yeah.
• 25:46
  - Great. So that about all the time we've got
• 25:48
  to talk about highlights, but
• 25:49
  before we go, let's just have one final question.
• 25:52
  So what advice would you give
• 25:54
  to anyone who's heading to an event like this
• 25:56
  and may be presenting for the first time?
• 25:59
  Alicia, do you want to go first?
• 26:00
  - Oh, presenting for the first time.
• 26:02
  I would say it's a bit different if it's talk
• 26:04
  or if it's a poster, but to talk slowly
• 26:06
  and try to keep it simple.
• 26:09
  One message at a time.
• 26:11
  And it's very easy for us
• 26:12
  to give three point answers sometimes at 0.1 or 0.2.
• 26:15
  And I think it's better to keep things short
• 26:18
  and be excited about your research.
• 26:21
  As soon as you get talking, you'll just enjoy it. So.
• 26:24
  - [Alys] Great. Anything do add?
• 26:26
  - I would say don't assume that everybody
• 26:29
  that comes to your poster
• 26:31
  works in that specific subfield.
• 26:35
  I got a lot of, I got some patient fellows come into mine
• 26:38
  and also wet lab scientists.
• 26:40
  And at first I did assume that there were (laughs)
• 26:44
  bio of petitions and then I realised,
• 26:46
  and then yeah, it's just about adapting the language.
• 26:50
  - So like keeping the message consistent,
• 26:51
  but adapting the way you explain it.
• 26:53
  - [Heather] Yeah. Yeah, yeah.
• 26:55
  - Great. Phillip, anything?
• 26:56
  - I'd say two things.
• 26:58
  This is my first international meeting
• 26:59
  for three or four years
• 27:00
  and I flew from Toronto
• 27:01
  and arrived the day before the conference.
• 27:03
  So I was jet lagged the first day
• 27:05
  and I was miserable
• 27:06
  even though I was, I was trying my best.
• 27:08
  So I think if you have time,
• 27:09
  if you're doing a long journey,
• 27:10
  if you have time to not go straight
• 27:12
  into the conference, it's good.
• 27:14
  But I, the presentation's important,
• 27:16
  working around and meeting people
• 27:18
  is just as important and enjoyable
• 27:20
  and I've got a lot more work like, collaborations
• 27:23
  and opinions from people that way as well.
• 27:27
  - [Alys] So I guess if you're not confident in-
• 27:29
  - Yeah. doing that, how-
• 27:31
  how's good to approach people?
• 27:32
  - Just have to try. Yeah.
• 27:34
  (Alys and Philip laugh)
• 27:35
  - [Alys] Put on a brave face. (laughs)
• 27:36
  - Yeah. I usually try and not to interrupt people.
• 27:39
  I'll see someone who I want to talk to
• 27:41
  and wait till they're walking past the poster
• 27:42
  by themselves or get them in a lunch break,
• 27:45
  introduce myself and say,
• 27:46
  I usually compliment them.
• 27:49
  Say I liked your most recent paper on whichever topic.
• 27:51
  Everyone likes to hear that.
• 27:53
  (everyone laughs)
• 27:53
  So then they're receptive and yeah.
• 27:56
  - [Alys] Great. So poster session's quite a good time
• 27:58
  to catch people.
• 28:01
  - [Alys] Amber?
• 28:02
  - I definitely second the travel thing.
• 28:04
  We arrived the day there was a snow storm in Munich
• 28:08
  and I ended up in Paris for a night unexpectedly, which,
• 28:10
  not bad in hindsight.
• 28:11
  But yeah, definitely give yourself a couple of days
• 28:15
  before, if it's an event internationally.
• 28:19
  In terms of posters, I'd say,
• 28:21
  think of it kinda like you're delivering a story.
• 28:23
  You don't need to say every single thing on your poster,
• 28:26
  but I'd also say it's a cross
• 28:28
  between a story and a conversation.
• 28:30
  Ask if someone knows something
• 28:32
  and if they want to know more about it
• 28:33
  and have those pauses
• 28:34
  and have that interaction say, oh
• 28:36
  what do you think about this?
• 28:38
  And then give your thoughts like, oh wow,
• 28:40
  well actually this is what I think from this
• 28:42
  but that's a really fascinating point.
• 28:43
  So keep it conversational as well and ask
• 28:46
  and you know, don't just talk at, talk
• 28:48
  with, is probably my recommendation.
• 28:51
  - [Alys] Thank you. And I think one highlight for all
• 28:53
  of us has been the lunch here.
• 28:55
  Is that agreed?
• 28:56
  - Oh gosh, I'm, it's a bit sad.
• 28:57
  (everyone laughs)
• 28:58
  I'm not gonna be fed coffee and take every few hours.
• 29:00
  - [Alys] Yeah. And the frequency of the food
• 29:01
  and drink here has been fab, hasn't it?
• 29:04
  Great. So that's all we have time for today.
• 29:06
  I'd like to thank our brilliant guests, Alicia Northall,
• 29:09
  Heather Marriott, Amber Sewell-Green,
• 29:11
  and Philip McGoldrick.
• 29:12
  You'll find more information on the event
• 29:14
  and all the sessions at symposium.mndassociation.org.
• 29:17
  And of course, you'll find bios on all of our guests
• 29:19
  and a transcript of the podcast on
• 29:21
  the Dementia Researcher website.
• 29:23
  But for now, I'm Alys Griffiths
• 29:24
  and you've been listening to
• 29:25
  the Dementia Researcher Podcast.
• 29:27
  Bye
• 29:28
  - Bye.
• 29:29
  (upbeat music)
• 29:30
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• 29:32
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• 29:33
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• 29:34
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• 29:37
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• 29:40
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• 29:44
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• 29:45
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• 29:47
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• 29:50
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• 29:52
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