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International Symposium on ALS / MND Roundup 2023
Episode 24115th December 2023 • Dementia Researcher Vodcast • Dementia Researcher
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The 34th International Symposium on ALS / MND organised by the MND Association took place in Basel, Switzerland from the 6-8 December 2023.

In this podcast Dr Alys Griffiths from The University of Sheffield hosts a discussion with three researchers to talk about their talks, and highlights from the biggest annual conference dedicated to ALS and MND research. Sharing news from researchers working around the world to better understand amyotrophic lateral sclerosis and motor neurone disease.

Sharing their highlights are:

Alicia Northall, Postdoctoral Researcher from University of Oxford. Alicia recently moved back to the UK after completing her PhD in Neuroscience at the University of Tubingen / Otto-von-Guericke University Magdeburg in Germany. Alicia’s works in Neuroimaging to characterise microstructural changes to the brain in living patients using 7-Tesla MRI.

Dr Philip McGoldrick, Research Associate at University of Toronto. Phil completed his PhD at University College London and is interested in the basic mechanisms that contribute to disease progression and investigate them using a mixture of cell and animal models, alongside post mortem patient tissue.

Amber Sewell-Green is a PhD Candidate and Accredited Practicing Dietitian (APD) at University of Queensland, Australia. Amber’s research is focused on improving Nutrition Care Guidelines for MND looking at energy balance and the role of lipids in ALS.

Heather Marriott is a PhD Student at King’s College London. Amber undertakes analysis of next-generation sequencing data using bioinformatics and machine learning to advance personalised medicine approaches in ALS/MND.

Links mentioned in the show:

Event website: https://symposium.mndassociation.org/

News from the event as it happened on X: https://bit.ly/alsmndsymp

A transcript of this show, links and show notes and profile on all our guests are available on our website at https://www.dementiaresearcher.nihr.ac.uk.

If you prefer to watch rather than listen, you will find a video version of this podcast on YouTube, on our website, and in selected podcast platforms.

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We gratefully acknowledge the support of our funders: Alzheimer’s Association, Race Against Dementia, Alzheimer’s Research UK, Alzheimer’s Society, and the National Institute for Health and Care Research.

The views and opinions expressed by guests in this podcast are their own and do not necessarily reflect those of the producers, funders, or sponsors.

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Transcripts

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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?

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- 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

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'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

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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

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in the monos, things like olive oils,

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but more of those kind of

plant and fish derived oils.

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And they were a huge part of the brain.

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And I think what I found

exciting is it started

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with drosophila, or your fly,

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then it went to mouse models,

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but then it was also found in IPSC lines,

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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,

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that there was a reduction in these

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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,

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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

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and rescued the cells.

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So I'm interested in that

from my own perspective.

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I had a poster here as well,

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but I'm looking at, you know,

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if providing people just enough

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energy can prevent weight loss,

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'cause anyone that,

contrary to popular belief,

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any weight loss, even if

someone's a bigger body size is

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considered with shorter life expectancy.

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But it seems to be that maybe

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it's a bit more complicated

than just calories

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and the type of energy,

whether it's coming from fat,

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seems to be a really big

part of the literature

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and I think there's a lot

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of compounding evidence that

there's a role in these.

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So it helps a little bit more

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step towards, maybe a bit more

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precise nutrition care guidelines

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and also something patients can do.

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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.

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- [Alys] So is that something

we don't know much about?

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- Yeah

- Sorry, I was gonna say,

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I thought it was really cool as well.

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- [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!

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- 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,

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- How did they select that plant enzyme?

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You know, how did they select

that plant enzyme as the...

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- I think they'd looked at,

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they didn't say specifically,

I would've guess

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that they looked at,

you know, this method of

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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

Speaker:

and then yeah, testing that in an organism

Speaker:

that's quite simple to

kind of then verify it.

Speaker:

But-

Speaker:

- Really nice.

Yeah,

Speaker:

it was some really interesting science

Speaker:

and kind of built its way back to humans,

Speaker:

which was really interesting

Speaker:

'cause a lot of these you go, oh

Speaker:

but is it clinically relevant?

Speaker:

And then it was nice that they

kind of built back to that.

Speaker:

- Yep. And then one of the

phenotypes that they rescued,

Speaker:

which is ALS relevant, was vulnerability

Speaker:

to glutamate, which can

cause excess toxicity.

Speaker:

So then this plant enzyme was

beneficial in an ALS context,

Speaker:

not just in the look and

it's really, really nice.

Speaker:

- Exactly.

Speaker:

And we've seen that theme of

cortical hyper excitability

Speaker:

and that perhaps that's

potentially maybe one

Speaker:

of the starting points that

the region of the brain

Speaker:

that might have that hyper excitability

Speaker:

or just, you know, the neurons

are over firing, then might

Speaker:

relate to the map of

whatever body part it is.

Speaker:

And that might be the area of the body

Speaker:

that first gets symptoms and spreads.

Speaker:

So yeah, really exciting.

Speaker:

- So it feels like that's got potentially

Speaker:

quite exciting trajectory forward?

Speaker:

- Yep.

- I think so, yeah.

Speaker:

I think it's got a lot of promise.

Speaker:

- I think the cortical hyper

excitability thing, you know,

Speaker:

it's a major feature of ALS

Speaker:

but it comes up in a

lot of different fields

Speaker:

because it, for neuro imaging,

it's really important for us

Speaker:

and can be measured using TMS.

Speaker:

But my colleague, Michael

Trubshaw, presented his work today

Speaker:

using magnetoencephalography.

Speaker:

It's a different kind

of imaging technique,

Speaker:

like EG, but with better

spatial resolution.

Speaker:

And he was showing that

this replicated a lot

Speaker:

of early results within ALS,

Speaker:

where beta power is decreased,

Speaker:

which is the oscillation

related to motor function,

Speaker:

but also showing data

from asymptomatic carriers

Speaker:

of C9 and SOD1 mutations

Speaker:

and showing that cortical excitability

Speaker:

is increased in those patients

Speaker:

who are symptom free entirely.

Speaker:

- Yeah.

Speaker:

- So I think it is one of the earliest

Speaker:

markers of the disease.

Speaker:

- [Amber] That something is going on.

Speaker:

Yeah-

- Yeah.

Speaker:

And it's linked to all the

different fields, you know,

Speaker:

it's not just neuroimaging,

it seems to be kind

Speaker:

of cropping up.

Speaker:

- [Amber] Yeah, absolutely.

Speaker:

- [Alys] Great. Heather,

another highlight for me?

Speaker:

- I saw a really nice poster about one

Speaker:

of the patient fellows, Rick Kells.

Speaker:

And what he was doing

Speaker:

is he creates artwork online

Speaker:

using several different tools

Speaker:

and what he's trying to do is

Speaker:

get lay summaries that the

University of Sheffield have done

Speaker:

with readable research

Speaker:

and then he just transforms

it into a picture.

Speaker:

And it was amazing to

see all of the pictures

Speaker:

and he was walking through them all.

Speaker:

It was so good, honestly.

Speaker:

- [Alys] Can you give us an example of

Speaker:

what one looked like?

Speaker:

Can you remember any of them?

- Oh.

Speaker:

There was so many, but there was,

Speaker:

so there was one,

Speaker:

this was based on his

own experience with MND.

Speaker:

Yeah, it was a beautiful

garden. Loads of butterflies.

Speaker:

Loads of plants because he

was like, oh the journey,

Speaker:

you never know where it's gonna take you.

Speaker:

The the journey's beautiful.

Speaker:

My wife's walking it through with me

Speaker:

and he says, you're

just getting a different

Speaker:

perspective online.

Speaker:

And that's one.

Speaker:

But then a scientific one also,

Speaker:

he was reading something about

peri-vascular fibroblasts

Speaker:

and how they can be altered in ALS.

Speaker:

So what he did was he actually drew,

Speaker:

he was drawing the whole

parasite blood-brain barrier.

Speaker:

He got a lovely little picture

Speaker:

but he didn't look scientific at all.

Speaker:

It was, it was, yeah,

it was so good. Yeah.

Speaker:

- And I guess great seeing posters

Speaker:

by people living with MND as well.

Speaker:

- [Heather] Yeah.

Speaker:

- Well, and I thought it

was really nice as well,

Speaker:

seeing the patient fellows with their

Speaker:

beautiful scarves.

- Yeah. Yeah.

Speaker:

I thought it was like a really light,

Speaker:

nice, non-stigmatizing way of saying,

Speaker:

this is how I'm identifying here.

Speaker:

- [Heather] Yeah.

Speaker:

- Did anyone else see a poster

by someone living with MND

Speaker:

or that had a contribution

for someone with MND?

Speaker:

- I saw a few, but I don't

think I give any concrete

Speaker:

examples.

Speaker:

- Yeah. (laughs)

Speaker:

- So many posters.

Speaker:

- It is, it gets a little, yeah, a lot

Speaker:

that your brain is-

- [Alys} So many posters.

Speaker:

- I didn't see any posters

by the patient advocates,

Speaker:

but I spoke to a few of them

Speaker:

and they're very, very impressive people.

Speaker:

- Yeah.

Speaker:

Their scientific knowledge was way

Speaker:

beyond what I thought it was gonna be.

Speaker:

It was very enlightening to talk to them.

Speaker:

It was really enjoyable.

Speaker:

- Also, they're so motivated.

Speaker:

I mean the conference is

exhausting even for the scientists

Speaker:

where, you know, you wanna

discuss all those tiny details

Speaker:

with someone you meet at a poster session.

Speaker:

- [Amber] Yeah.

Speaker:

- But yeah, I'm, you know,

you're exhausted throughout

Speaker:

because it's a lot of work

Speaker:

and the patients are so motivated.

Speaker:

It's, it's inspiring.

Speaker:

- I saw an interesting post

that was presenting clinic data

Speaker:

and it was really interesting

'cause this woman was from

Speaker:

the States and she was saying

would this work in the UK

Speaker:

and it was like satisfaction cards

Speaker:

that were given out at the ALS clinic.

Speaker:

And she said it helps people know

Speaker:

which your ALS clinic to go to.

Speaker:

She was like, would that happen in the UK?

Speaker:

I was like, well you could

do your satisfaction survey

Speaker:

but it's still the one you go into.

Speaker:

(everyone laughs)

Speaker:

But they'd done little like flyers

Speaker:

for people to take away with them-

Speaker:

- Oh!

Speaker:

- so you could look at

all the data online,

Speaker:

which I've-

- Oh, right.

Speaker:

never thought of doing before.

Speaker:

- [Philip] Yeah.

Speaker:

But she was like, you

just scan the QR code,

Speaker:

gave me a flyer and off we went.

Speaker:

- [Amber] Does the scan,

does it, does the scan

Speaker:

bring it to a server?

Speaker:

- No, so it takes you to

a website which highlight

Speaker:

their survey findings for

all the different clinics

Speaker:

around the US.

- Oh, Okay. Yeah.

Speaker:

(everyone laughing)

Speaker:

- I'm not good on it yet.

Speaker:

- [Philip] So, it's like Yelp for clinics.

Speaker:

- Yeah! But beautifully presented.

Speaker:

- [Philip] Yeah.

Speaker:

- And they had, she was like,

oh we've got a graphic design

Speaker:

team who helped us do this.

Speaker:

And I thought very, very impressive.

Speaker:

So we're gonna get kicked out

the building in a few minutes

Speaker:

so has anyone got one final highlight?

Speaker:

- I did, like, I can't name the specific

Speaker:

talk 'cause it's just come

to mind. I didn't prepare,

Speaker:

but I think it was on the

first day, or the second day

Speaker:

there was a focus on a

clinical care session

Speaker:

and there was a talk about

non-specific caregivers.

Speaker:

So not people who are trained

or employed to be caregivers,

Speaker:

but people in the home

or colleagues, friends.

Speaker:

They said it could be anyone, someone

Speaker:

who regularly drives you to the hospital.

Speaker:

But that was really amazing

because they focused

Speaker:

for a long time on the, you

know, psychological stress

Speaker:

and the implications of being a

Speaker:

caregiver and how difficult that is.

Speaker:

But also they finish

Speaker:

with such a positive

note about the benefits.

Speaker:

So they ask all those

non-specific caregivers

Speaker:

to summarise their experiences.

Speaker:

And it was really nice to see that,

Speaker:

especially if it was

someone in your family,

Speaker:

you felt closer to them, you

valued the time more with them.

Speaker:

And it was nice to end on

a positive note about MND.

Speaker:

- Could I also add, in the

final session, the prize won

Speaker:

by Neil Schneider and his

team, which was incredible

Speaker:

for developing a FUS antisense

oligonucleotide treatment.

Speaker:

And we met one of the patients

Speaker:

and they've been

Speaker:

not declined in three years

from a very aggressive form

Speaker:

of ALS and it was very

emotional, beautiful.

Speaker:

It was amazing.

- Yeah

Speaker:

- And just as a bit of background,

Speaker:

if viewers don't what that is,

Speaker:

FUS is a very aggressive form

Speaker:

that typically is juvenile

or found in children.

Speaker:

And death is usually

within about a year, sadly.

Speaker:

And he developed a treatment

Speaker:

that he started on one patient

Speaker:

and today we actually saw

someone who'd actually improved

Speaker:

and is still living three years later,

Speaker:

which is phenomenal

Speaker:

and something quite groundbreaking

Speaker:

and I think gives a lot of hope.

Speaker:

And I think this whole

conference gives a lot of hope.

Speaker:

'cause there are a lot

of positive steps and

Speaker:

and treatments that before we went,

Speaker:

oh, there's no treatments.

- Yeah

Speaker:

I don't think I can confidently say now

Speaker:

that there's no treatments

in my talk anymore.

Speaker:

So Yeah.

- Yeah,

Speaker:

- [Alicia] Yeah. You're so right.

Speaker:

- That feels like a positive place to be.

Speaker:

- [Amber] Yeah.

Speaker:

- Great. So that about

all the time we've got

Speaker:

to talk about highlights, but

Speaker:

before we go, let's just

have one final question.

Speaker:

So what advice would you give

Speaker:

to anyone who's heading

to an event like this

Speaker:

and may be presenting for the first time?

Speaker:

Alicia, do you want to go first?

Speaker:

- Oh, presenting for the first time.

Speaker:

I would say it's a bit

different if it's talk

Speaker:

or if it's a poster, but to talk slowly

Speaker:

and try to keep it simple.

Speaker:

One message at a time.

Speaker:

And it's very easy for us

Speaker:

to give three point answers

sometimes at 0.1 or 0.2.

Speaker:

And I think it's better

to keep things short

Speaker:

and be excited about your research.

Speaker:

As soon as you get talking,

you'll just enjoy it. So.

Speaker:

- [Alys] Great. Anything do add?

Speaker:

- I would say don't assume that everybody

Speaker:

that comes to your poster

Speaker:

works in that specific subfield.

Speaker:

I got a lot of, I got some

patient fellows come into mine

Speaker:

and also wet lab scientists.

Speaker:

And at first I did assume

that there were (laughs)

Speaker:

bio of petitions and then I realised,

Speaker:

and then yeah, it's just

about adapting the language.

Speaker:

- So like keeping the message consistent,

Speaker:

but adapting the way you explain it.

Speaker:

- [Heather] Yeah. Yeah, yeah.

Speaker:

- Great. Phillip, anything?

Speaker:

- I'd say two things.

Speaker:

This is my first international meeting

Speaker:

for three or four years

Speaker:

and I flew from Toronto

Speaker:

and arrived the day before the conference.

Speaker:

So I was jet lagged the first day

Speaker:

and I was miserable

Speaker:

even though I was, I was trying my best.

Speaker:

So I think if you have time,

Speaker:

if you're doing a long journey,

Speaker:

if you have time to not go straight

Speaker:

into the conference, it's good.

Speaker:

But I, the presentation's important,

Speaker:

working around and meeting people

Speaker:

is just as important and enjoyable

Speaker:

and I've got a lot more

work like, collaborations

Speaker:

and opinions from people that way as well.

Speaker:

- [Alys] So I guess if

you're not confident in-

Speaker:

- Yeah.

doing that, how-

Speaker:

how's good to approach people?

Speaker:

- Just have to try.

Yeah.

Speaker:

(Alys and Philip laugh)

Speaker:

- [Alys] Put on a brave face. (laughs)

Speaker:

- Yeah. I usually try and

not to interrupt people.

Speaker:

I'll see someone who I want to talk to

Speaker:

and wait till they're

walking past the poster

Speaker:

by themselves or get

them in a lunch break,

Speaker:

introduce myself and say,

Speaker:

I usually compliment them.

Speaker:

Say I liked your most recent

paper on whichever topic.

Speaker:

Everyone likes to hear that.

Speaker:

(everyone laughs)

Speaker:

So then they're receptive and yeah.

Speaker:

- [Alys] Great. So poster

session's quite a good time

Speaker:

to catch people.

Speaker:

- [Alys] Amber?

Speaker:

- I definitely second the travel thing.

Speaker:

We arrived the day there

was a snow storm in Munich

Speaker:

and I ended up in Paris for

a night unexpectedly, which,

Speaker:

not bad in hindsight.

Speaker:

But yeah, definitely give

yourself a couple of days

Speaker:

before, if it's an event internationally.

Speaker:

In terms of posters, I'd say,

Speaker:

think of it kinda like

you're delivering a story.

Speaker:

You don't need to say every

single thing on your poster,

Speaker:

but I'd also say it's a cross

Speaker:

between a story and a conversation.

Speaker:

Ask if someone knows something

Speaker:

and if they want to know more about it

Speaker:

and have those pauses

Speaker:

and have that interaction say, oh

Speaker:

what do you think about this?

Speaker:

And then give your thoughts like, oh wow,

Speaker:

well actually this is

what I think from this

Speaker:

but that's a really fascinating point.

Speaker:

So keep it conversational as well and ask

Speaker:

and you know, don't just talk at, talk

Speaker:

with, is probably my recommendation.

Speaker:

- [Alys] Thank you. And I

think one highlight for all

Speaker:

of us has been the lunch here.

Speaker:

Is that agreed?

Speaker:

- Oh gosh, I'm, it's a bit sad.

Speaker:

(everyone laughs)

Speaker:

I'm not gonna be fed coffee

and take every few hours.

Speaker:

- [Alys] Yeah. And the

frequency of the food

Speaker:

and drink here has been fab, hasn't it?

Speaker:

Great. So that's all

we have time for today.

Speaker:

I'd like to thank our brilliant

guests, Alicia Northall,

Speaker:

Heather Marriott, Amber Sewell-Green,

Speaker:

and Philip McGoldrick.

Speaker:

You'll find more information on the event

Speaker:

and all the sessions at

symposium.mndassociation.org.

Speaker:

And of course, you'll find

bios on all of our guests

Speaker:

and a transcript of the podcast on

Speaker:

the Dementia Researcher website.

Speaker:

But for now, I'm Alys Griffiths

Speaker:

and you've been listening to

Speaker:

the Dementia Researcher Podcast.

Speaker:

Bye

Speaker:

- Bye.

Speaker:

(upbeat music)

Speaker:

- [Announcer] The Dementia

Researcher Podcast

Speaker:

was brought to you

Speaker:

by University College London

Speaker:

with generous funding from

the UK National Institute

Speaker:

for Health Research,

Alzheimer's Research UK,

Speaker:

Alzheimer's Society,

Alzheimer's Association,

Speaker:

and Race Against Dementia.

Speaker:

Please subscribe, leave us a review

Speaker:

and register on our

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Speaker:

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Speaker:

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