- [Announcer] "The Dementia
Researcher" podcast,
Speaker:talking careers, research,
conference highlights,
Speaker:and so much more.
Speaker:- Hello, and welcome to the
"Dementia Researcher" podcast.
Speaker:Today we're in Basel in Switzerland
Speaker:to bring you the highlights
Speaker:from the 34th International
Symposium on ALS and MND.
Speaker:(down tempo music)
Speaker:I am Alys Griffiths, and I'm
an NIHR Senior Research Fellow
Speaker:at the University of Sheffield.
Speaker:I'm delighted to be
guest hosting this show.
Speaker:Let me start with today's fun fact.
Speaker:Basel is a cultural and pharmaceutical hub
Speaker:at the crossroads of
Switzerland, France, and Germany,
Speaker:boasting the world's oldest art collection
Speaker:and being the home to the
headquarters of pharma giant,
Speaker:all great reasons why it
makes a wonderful home
Speaker:for this year's symposium.
Speaker:As ever in these
conference highlight shows,
Speaker:I'm joined by researchers
who are gonna share
Speaker:their event highlights
to provide a snapshot
Speaker:of what's been talked about this week.
Speaker:Let's meet the guests.
Speaker:(down tempo music)
Speaker:With me today is Alicia
Northall, Heather Marriott,
Speaker:Amber Sewell-Green, and Philip McGoldrick.
Speaker:Let's start with some quick introductions.
Speaker:Alicia, could you tell us
about yourself, please?
Speaker:- Hi, I'm Alicia.
Speaker:I'm from the University of Oxford.
Speaker:I joined as a postdoc
about six months ago,
Speaker:and I work on neuroimaging in ALS,
Speaker:trying to find new biomarkers.
Speaker:- [Alys] Heather, could you go next?
Speaker:- Yup, I'm a third year PhD student
Speaker:at King's College London, and I study,
Speaker:I use multiomics in ALS and MND
Speaker:to try and identify subgroups of patients
Speaker:which might be beneficial for
clinical trial recruitment.
Speaker:- Amber, you've come the furthest.
Speaker:Could you introduce yourself, please?
Speaker:- Hi, I'm Amber.
Speaker:I'm from the University of Queensland,
Speaker:all the way from Australia.
Speaker:I'm a first-year PhD
student and also a dietitian
Speaker:with a background in neuroscience.
Speaker:I'm looking to improve
nutrition care guidelines
Speaker:with a focus on energy and
fats in Motor Neuron Disease.
Speaker:- [Alys] And Philip.
Speaker:- Hey, I'm Philip McGoldrick.
Speaker:I'm a research associate at
the University of Toronto,
Speaker:funded by ALS Canada and Brain Canada.
Speaker:I work on nucleosides
possibly transport in ALS.
Speaker:- Thank you. So I know
this is the first time
Speaker:for all of you joining on the podcast,
Speaker:so thank you for joining us.
Speaker:Let's get to some highlights.
Speaker:(down tempo music)
Speaker:So I'm sure listeners
already know the format,
Speaker:but what we do is go around
the room a couple of times
Speaker:and each person shares one
of their favourite talks
Speaker:and posters and then we'll
just have a chat about them.
Speaker:But before we get going, I
wanted to give you all the chance
Speaker:to talk about any talks
you've given this week.
Speaker:Has anyone been presenting?
Speaker:- Only a poster.
- [Alys] Yeah.
Speaker:- I can discuss my
colleague that did present
Speaker:'cause I know enough about her work,
Speaker:so I'm happy to share that.
Speaker:My colleague Jeryn Chang,
Speaker:she's been doing really amazing work
Speaker:with MRI images of the brain.
Speaker:She started on hypothalamic volume,
Speaker:a little part of the brain
that we know is involved
Speaker:with metabolism and appetite.
Speaker:And then they actually showed
pictures of non-food items
Speaker:and low-calorie and high-calorie
food items in controls
Speaker:in ALS patients in a fed and fasted state.
Speaker:So I guess the first part
of her research showed
Speaker:that there's a bit of background
showing the hypothalamus
Speaker:may shrink in people with
Motor Neuron Disease,
Speaker:but they found a curve, so the
lowest and the highest BMIs,
Speaker:there was a difference, but
the middle BMI, not so much,
Speaker:so it's not quite so
straightforward as we think.
Speaker:But I think the main
things that she found was
Speaker:in the fed and fasted state,
Speaker:the high-calorie foods had
a lot more lighting up,
Speaker:particularly in the right temporal pole
Speaker:and in the cerebellum for controls,
Speaker:but it didn't seem to
be so for MND patients.
Speaker:So it seems to be maybe reduced activation
Speaker:or a bit of a dulling in this.
Speaker:And there is some
literature kind of showing
Speaker:that these regions of the
brain are associated with food
Speaker:and reward and maybe social benefits.
Speaker:So just starts to highlight I guess,
Speaker:areas of the brain we don't
think about with appetite
Speaker:that might be affected in people with MND.
Speaker:So I think her research is
gonna be really exciting,
Speaker:and I'm very proud of her.
Speaker:She did a wonderful job.
Speaker:- [Alys] Great, so I
guess, what would that mean
Speaker:for people we're seeing in clinic?
Speaker:- So I guess it would
mean targeted approaches
Speaker:that if people look at
appetite differently,
Speaker:maybe they may not be driven by memories.
Speaker:Obviously, I can't make
exact to say causation,
Speaker:so let me put a little
bit of a marker there,
Speaker:but I see it as we might
know how to approach
Speaker:and have a more individualised approach.
Speaker:Especially myself being a clinician,
Speaker:if we know there's areas of
the brain that may behave
Speaker:a bit differently compared
to healthy populations,
Speaker:we may address how we
approach encouraging people
Speaker:with weight loss 'cause what
would work with other people
Speaker:may not work in MND populations, so.
Speaker:Or just explain how they feel
about food, if that's changed.
Speaker:In other cases, we know that
there's some taste changes,
Speaker:food tastes better or worse
or there's decreased appetite,
Speaker:and we may be able to provide
a bit of an explanation why,
Speaker:which I think is always nice.
Speaker:- Thank you. Philip, you
said you did a poster?
Speaker:- Yeah, yeah, I had a
poster on the first day.
Speaker:So my work is on C9RO72,
Speaker:which is the most common
cause of ALS and FTD.
Speaker:I work on the loss of
function of the protein
Speaker:because it's a fairly understudied area.
Speaker:So what I'm interested
in is the mechanisms,
Speaker:that loss of function,
Speaker:the effect that it has
on cellular mechanisms.
Speaker:So I've been looking at
nucleocytoplasmic transport
Speaker:because we know the gain
of function toxicities
Speaker:affect nucleosides plasmic transport.
Speaker:I want to see if they
could also be affected
Speaker:by loss of function.
Speaker:So we have some overlap
with some of the work
Speaker:that was presented here and
we're quite excited about.
Speaker:- Did you get any good
conversations at your poster?
Speaker:- I was talking for about two hours,
Speaker:(Amanda chuckling)
Speaker:only to about four people,
Speaker:so the people who liked it liked it.
Speaker:- [Alys] Great. Alicia?
Speaker:- I didn't have a poster or
a talk, so I joined my group
Speaker:around the time of the
submission deadline.
Speaker:So it's actually nice
to be a fly on the wall
Speaker:for the first time at conference
Speaker:and just be able to soak it all in
Speaker:and ask lots of questions.
Speaker:- [Alys] And Heather?
- Yeah, so I presented
Speaker:a poster on the genetic analysis of NEFH,
Speaker:neurofilament heavy chain
gene, in sporadic ALS.
Speaker:And the reason that we
did this is because NEFH
Speaker:is included a lot of
genetic screening panels,
Speaker:but the actual genetic
mutations and variants
Speaker:that we find in NEFH haven't
been robustly associated
Speaker:with ALS risk.
Speaker:So we wanted to try and
characterise that further
Speaker:and actually see if
variants do modify ALS risk
Speaker:by performing a large
scale screening analysis
Speaker:of the project of mine,
ALS sequencing cohort.
Speaker:- [Alys] And did you have
any good conversations?
Speaker:- Yeah, there was a couple of
people that were interested,
Speaker:although they were wet lab people.
Speaker:and I'm a pure, purely,
pure bio of petition.
Speaker:I couldn't really answer their questions
Speaker:that well, but (laughs).
Speaker:- That's the fear isn't it?
- Yeah, yeah.
Speaker:- [Alys] So they, they're doing
Speaker:similar work from a different angle.
Speaker:- Yeah, so, so we confirmed
Speaker:previous reports in the
literature which say that
Speaker:variants in a specific domain
of NEFH, the tail domain,
Speaker:which affects phosphorylation
of the protein
Speaker:that is found in the serum in CSF,
Speaker:they actually said that
Speaker:perhaps the mutations are
driving the phosphorylation.
Speaker:So they're really interested in
Speaker:tackling it from a different approach,
Speaker:like introducing mutations
into in vitro models.
Speaker:So it's quite nice to sort of
Speaker:gain a perspective from the other side.
Speaker:- Great. So shall we move on
Speaker:to everybody's highlights?
Speaker:Philip, do you wanna go first?
Speaker:- Yeah, my first highlight was a talk by
Speaker:Gary Armstrong from McGill
University in Montreal in Canada.
Speaker:And Gary's made, he's used CRISPR to
Speaker:modify endogenous Zebra fish TDP43.
Speaker:So this is a much more
physiological model of disease
Speaker:and it aids the fish and
perform lots of behavioural
Speaker:and imaging answers.
Speaker:And I think it's really important
Speaker:because then this is a physiological model
Speaker:in a small animal model,
Speaker:which is much more tractable
for other experiments.
Speaker:I think it could be very, very powerful.
Speaker:- And what was it you enjoyed
about his presentation?
Speaker:- Everything. It was,
Speaker:I think it was really
good characterization.
Speaker:Yeah, really good
characterization and really good,
Speaker:it has a lot, would have a lot of power
Speaker:and a lot of translatability
for different studies.
Speaker:- Great. Amber, do you wanna
Speaker:tell us about your first highlight?
Speaker:- Yeah, I'm, I'm gonna
start a little bit broad
Speaker:and I guess something I was surprised
Speaker:and really enjoyed is the
focus on quality of life
Speaker:and the actual lived
experience of the disease.
Speaker:I think there was a
really huge representation
Speaker:of studies on psychology,
Speaker:studies on quality of life,
Speaker:studies on nutrition,
Speaker:studies on allied health
Speaker:that span through the posters
Speaker:and through the talks.
Speaker:In particular, there
were a few on ACT therapy
Speaker:that were really interesting.
Speaker:There was also one by Eneida Mioshi
Speaker:and she talked about just how
to manage behavioural changes.
Speaker:'Cause I guess we see, you
know, maybe 15% of people
Speaker:with ALS will have that FTD spectrum,
Speaker:but then still more,
Speaker:around 35%, will actually still present
Speaker:with those behavioural
changes of things like apathy.
Speaker:And if we can understand
that as clinicians
Speaker:and then actually relay that to the carers
Speaker:that know your partner or your child
Speaker:or whoever it may be, is not depressed.
Speaker:They're just struggling with motivation
Speaker:that can actually really
change the course of their, of
Speaker:how they behave and how they interact.
Speaker:So I think that was a really,
Speaker:presented some really powerful
Speaker:guides for carers and clinicians
Speaker:and for clinicians to share with carers.
Speaker:- [Alys] Yeah. Is that the mind toolkit?
Speaker:- Mind toolkit? Yeah,
so I'm really excited
Speaker:and I think in what I've looked at and
Speaker:and seen as a clinician is there really is
Speaker:that lack of standardisation.
Speaker:So at seeing those toolkits come out
Speaker:and actually being looking
forward to a future
Speaker:where there are online
tools for clinicians
Speaker:and carers is something I
think is really exciting.
Speaker:- [Alys] Great. So you've been kind of
Speaker:looking at things from a,
how will this be helpful-
Speaker:- Yeah
Speaker:- [Alys] as a clinician and researcher?
Speaker:- Yeah, we run research,
Speaker:like, I'm a clinician myself
Speaker:but we also run research
clinics so we see a lot
Speaker:of the human side of it four days a week.
Speaker:So really you get that hands-on
patient and care experience.
Speaker:So I'm always kind of keeping
that in the back of my mind
Speaker:as yeah, how to better standardise it, how
Speaker:to improve quality of care.
Speaker:- Great. Thank you. Lucia?
Speaker:- So I think most of my
highlights are probably from the
Speaker:neuroimaging sessions,
Speaker:but I think I'd like to
start with something that was
Speaker:not exactly in my area.
Speaker:So the talk by Haley Cropper,
Speaker:hope I said the name right,
Speaker:from the University of Illinois,
Speaker:which was focusing on the,
well a couple of things
Speaker:about how injury can perhaps
predispose certain people
Speaker:to develop MND.
Speaker:And of course, not
everyone who has injuries
Speaker:develops MND, but she had
a population of patients
Speaker:who had been involved in exercise,
Speaker:mostly high level exercise I think?
Speaker:Hopefully didn't get that wrong.
Speaker:And she looked at where they'd
had injuries in the past
Speaker:and changes in the the
spinal cord, the vertebrae
Speaker:and where the onset site
of their disease was.
Speaker:If they had had problem
in the specific part
Speaker:of the left leg and they had
Speaker:the ALS onset site was
Speaker:in the same place, which is something
Speaker:I've always been interested in.
Speaker:So it was really nice
to look at the natural
Speaker:history of those patients.
Speaker:And she also had some
great post-mortem data
Speaker:and looking at where the
disease may spread up
Speaker:from the spinal cord up to the medulla.
Speaker:That was my highlight.
Speaker:- [Alys] That sounds really interesting.
Speaker:So is she looking at specific
types of sport or just?
Speaker:- So I'm not sure exactly
Speaker:but she had a sample
of I think 18 patients
Speaker:and eight with post-mortem.
Speaker:I'm not sure if there
are exclusively patients
Speaker:who had a history of high level exercise
Speaker:or it just happened to
be the case that a lot
Speaker:of them were involved in sports.
Speaker:But I think it's one
of those things that's
Speaker:so complicated when we
think of lifestyle factors
Speaker:like diet and exercise,
but they're understudied
Speaker:and I think that a lot of patients
Speaker:and their caregivers are just interested
Speaker:in risk of exercise but things like that.
Speaker:- [Alys] Yeah and I think especially
Speaker:with there being kind of
some high profile people
Speaker:in the media who've got sports backgrounds
Speaker:that kind of draws attention
Speaker:to that kind of work, doesn't it?
Speaker:- Yeah, definitely.
Speaker:Yeah, there's lots of people
Speaker:who are doing those challenges
Speaker:while they've still got
a motor function left.
Speaker:Really inspiring, I think,
to the whole community
Speaker:- Heather.
Speaker:- Yeah, so one
Speaker:of my favourite highlights
was from the genetics
Speaker:and genomics session at day one.
Speaker:And I think one of my favourite talks
Speaker:was that was by Yun Wang, at UMC Utrecht
Speaker:and she developed a computational
tool called SpliPath,
Speaker:which can identify intronic
splice site hotspots
Speaker:in the whole genome.
Speaker:So she applied it to paired RNA
Speaker:and DNA sequencing data of people with ALS
Speaker:and she actually found that,
she actually found mutations,
Speaker:splice site mutations in KIF5A,
Speaker:which have been previously reported.
Speaker:But she also found some promising
Speaker:mutations in other genes as well.
Speaker:So I think she might extend it genome wide
Speaker:and then hopefully she
might identify some new
Speaker:genes which you can't
really get in the genome
Speaker:because it, this is in
the non-coding genome.
Speaker:It's not in the coding
genome that we usually get
Speaker:with like her exome sequencing.
Speaker:- [Alys] So for those
of us not in genetics-
Speaker:- Yes
Speaker:- [Alys] where does that go next?
Speaker:- Ooh. Okay. (laughs)
Speaker:Okay. So as in, in terms of if her gene
Speaker:has been identified, then what happens?
Speaker:- [Alys] So, what do
you think she's gonna do
Speaker:next to take this forward?
Speaker:- Ah, okay.
Speaker:So, I think what she was planning to do,
Speaker:and I don't know if I'm wrong on this,
Speaker:but she's planning to extend,
extend it genome wide.
Speaker:So she was initially looking in KIF5A
Speaker:because they already have the
splice site mutations just
Speaker:to see if the tool is actually
capable of picking it up.
Speaker:But she's gonna do it genome wide
Speaker:and then from there she finds anything
Speaker:and I think they might be
functionally validating it
Speaker:and then screening in people,
large scale populations
Speaker:to then see if it can be a candidate gene.
Speaker:- Anybody else got a highlight
that they'd like to share?
Speaker:- Yeah, there was a really wonderful talk
Speaker:in the kind of cell biology
Speaker:in the afternoon of the
first day by Alex Cammack.
Speaker:And that was talking about
lipid pathways or fat pathways
Speaker:and particularly in C9 variants, which
Speaker:that was particularly interesting again
Speaker:'cause I think there's
that Dementia ALS crossover
Speaker:and that were talking about the basically
Speaker:four genes that are linked to lower levels
Speaker:of unsaturated fatty acids.
Speaker:Your unsaturated fatty acids, if we think
Speaker:of saturated is usually something
Speaker:that's solid at room temperature,
Speaker:unsaturated the ones that's liquid.
Speaker:Our unsaturateds, like our fish or
Speaker:in the monos, things like olive oils,
Speaker:but more of those kind of
plant and fish derived oils.
Speaker:And they were a huge part of the brain.
Speaker:And I think what I found
exciting is it started
Speaker:with drosophila, or your fly,
Speaker:then it went to mouse models,
Speaker:but then it was also found in IPSC lines,
Speaker:which are lines when we take cells
Speaker:and take them right back to the start
Speaker:and then can reprogram
them as motor neurons.
Speaker:Some really cool science
and showed that, yeah there,
Speaker:that there was a reduction in these
Speaker:and it was linked to poor prognosis.
Speaker:And then in post-mortem samples.
Speaker:So when people kindly
donate brains for example,
Speaker:or spinal cords for
research, we found the same,
Speaker:like these lower levels
and they provided some,
Speaker:or he talked about some
treatment options where they
Speaker:provided ASOs, where you can treat this
Speaker:and kind of reverse it
and it actually helped
Speaker:and rescued the cells.
Speaker:So I'm interested in that
from my own perspective.
Speaker:I had a poster here as well,
Speaker:but I'm looking at, you know,
Speaker:if providing people just enough
Speaker:energy can prevent weight loss,
Speaker:'cause anyone that,
contrary to popular belief,
Speaker:any weight loss, even if
someone's a bigger body size is
Speaker:considered with shorter life expectancy.
Speaker:But it seems to be that maybe
Speaker:it's a bit more complicated
than just calories
Speaker:and the type of energy,
whether it's coming from fat,
Speaker:seems to be a really big
part of the literature
Speaker:and I think there's a lot
Speaker:of compounding evidence that
there's a role in these.
Speaker:So it helps a little bit more
Speaker:step towards, maybe a bit more
Speaker:precise nutrition care guidelines
Speaker:and also something patients can do.
Speaker:If we've got some guidelines
that are a bit clearer,
Speaker:then it kind of takes
the power back in hands.
Speaker:So I was excited about that.
Speaker:- [Alys] So is that something
we don't know much about?
Speaker:- Yeah
- Sorry, I was gonna say,
Speaker:I thought it was really cool as well.
Speaker:- [Alys] Yeah. I'd love
to hear your thoughts.
Speaker:- 'Cause one of their
ways to treat the problem
Speaker:with the polyunsaturated fats
Speaker:was they used a plant enzyme
Speaker:that doesn't exist in humans.
Speaker:- [Alys] Oh!
Speaker:- So they expressed
that in their IPS cells
Speaker:and it rescued the phenotypes.
Speaker:So it's really cool
biology that, you know,
Speaker:taking the gene from another
organism that humans don't have
Speaker:and then using it for
human health is really how,
Speaker:- How did they select that plant enzyme?
Speaker:You know, how did they select
that plant enzyme as the...
Speaker:- I think they'd looked at,
Speaker:they didn't say specifically,
I would've guess
Speaker:that they looked at,
you know, this method of
Speaker:the pathways involved in
polyunsaturated fat production
Speaker:aren't common in humans,
Speaker:but they know it's common in plants
Speaker:and another organism that
can't, maybe sea elegans?
Speaker:- A lot of plants, you know, a lot
Speaker:of our oils are plant derived
Speaker: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)
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