October 9, 2025 • 15 mins
Interview Highlight: Professor Lauren Ayton - World Sight Day
In this Interview Highlight Peter Greco hears from Professor Lauren Ayton from the Centre for Eye Research Australia highlighting October 9, World Sight Day and their focus on Ushers Syndrome for their Giving Day.
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S1 (00:13):
Well, World Sight Day, October 9th. Depending on when you
hear this interview, maybe you've experienced the day already, or
maybe you're about to. Anyway, let's chat about it with
Professor Lauren. I am from the center for Eye Research. Lauren,
always great to catch up. Thanks so much for your time.
S2 (00:28):
Always great to talk to you, Peter. Thank you for
having me on.
S1 (00:30):
Just about your focus, if you like, for World Sight Day. Yeah,
you have a bit of an emphasis on usher syndrome.
S2 (00:36):
We do this year. We do. So we, um, have
had a lot of years of World Sight Day where
we have had a focus on inherited retinal diseases. And
this year we're, I guess, targeting an even more and
really trying to raise awareness of usher syndrome. And for
those of your listeners who haven't heard of Usher syndrome before,
it's actually the most common syndromic form of inherited retinal disease.
(00:57):
So it means it affects both the eyes but other
parts of the body. And in the case of usher syndrome,
it's mainly hearing and balance that can be affected as well.
S1 (01:06):
So what about in terms of when it's diagnosed or
how easy is it to diagnose?
S2 (01:10):
It's a really great question, Peter. So it's actually changed
a lot recently. So historically what would happen is and
I should caveat this, that there are different subtypes of
usher syndrome. And everyone has a different journey. But for
one of the subtypes often children are born deaf. And
so that's picked up in their newborn screening. And what
happened historically is that those kids grew up with a
(01:32):
hearing loss, but they didn't start losing their vision until
they were in late primary school. So roughly around ten
years of age. What's happened in the last few years
is that we now have genetic tests that we can
do to find out if a child does have usher syndrome.
So it's completely changed that. So if a child is
picked up as being deaf at birth, they'll undergo a
genetic test. If the parents agree to look for other
(01:56):
conditions and other causes of hearing loss. And so often
families will then realize their child has usher syndrome as
a newborn. And as you can imagine, that then, you know,
raises a lot of, um, support needs really for the family,
you know, how do you best raise that child when
their vision is normal for the first ten years, and
then we'll start to change.
S1 (02:16):
Well, I learned very early on during this program that
early intervention is such a critical thing. And I guess, okay,
the news might not be good if someone has usher syndrome,
you know, with their diagnosis if you like. But I
guess you can do proactive things to sort of minimize
any damage from it or indeed, you know, give the
child the best chance as far as the start in
(02:36):
life goes.
S2 (02:37):
Absolutely. Now you're 100% right, and particularly with usher syndrome,
because it affects the cells in the ear. And that's
why people lose their hearing. It also affects their balance.
And so one of the biggest things that we can
do for these kids is help them through physiotherapy. So
helping with their balance and their development and things like that.
Obviously we have things like hearing aids and cochlear implant
(02:58):
for hearing loss, which have just life changing. And now
what we're trying to do at Sierra is come up
with the same solutions for vision loss, trying to find
some some treatments that could help people with these conditions.
S1 (03:09):
You talk about the balance? I mean, you just have
to think about it a little bit. I mean, obviously
in terms of falls and things that can happen from that,
that is such a critical thing as well.
S2 (03:18):
Absolutely, absolutely. And I think quite often people don't realize
how much balance affects so much of your development. So,
you know, if you're a baby, learning, learning to walk
is really hard. Learning to sit, learning to ride a bike.
All of these become really, you know, challenging milestones. And
I guess the flip side is, you know, ones that
the families really celebrate when the kids do get there,
(03:39):
which they can with that support.
S1 (03:41):
Is that the third thing, that you're probably not in
a position to kind of know how much that impacts
on a child's balance, particularly, you know, early on in
life because they maybe can't express it so well.
S2 (03:50):
Yeah, that's exactly right. And, and I think, um, this
is kind of where genetic testing really helps people and
families with usher syndrome, because historically, the parents often weren't
really sure why the child was struggling to hit some
of those milestones. Whereas now, if you know that this
is the syndrome that that they're living with, uh, yeah.
Like you said before, you can target the early interventions.
(04:10):
You can get them the help they need to be
able to develop as they need to.
S1 (04:13):
Now it's a degenerative disease. So, you know, sad in
a sense, the longer it goes, the worse the symptoms get.
Would that be fair?
S2 (04:21):
Yeah. Yeah. And again yeah there's there's all sorts of
different subtypes of ushers. But um, often we do see that,
that the um, particularly the vision loss, you know, is
a form of retinitis pigmentosa. So most of our listeners
will have heard of RPE before. Yeah. And so very
much follows that the sort of similar, um, changes that
we see in RPE. What we are able to do is,
(04:43):
is obviously monitor people over time to sort of see
how that changes. And as I mentioned before, we're obviously
then trying to find ways to intervene and and try
and slow that down.
S1 (04:53):
One of the things I was going to ask you
was that I've spoken to people with usher syndrome and
their hearing and, um, sight deteriorates at different rates in
different people. Is that part of it, the subtype kind
of complications, if you like.
S2 (05:05):
That's exactly right. So there's all sorts of different genes
that are affected and different subtypes. And interestingly, even people
that have the same type of gene variant can, can
express in different ways. And so, you know it, it's
all of these inherited retinal diseases. Keep us guessing that's
for sure. There's no clear answer. If you have this
this is what you're going to experience. But if we
(05:26):
know the subtype, we can give people a rough idea of,
you know, the potential times that they might experience some
of these changes.
S1 (05:33):
I guess, from a professional point of view. Lauren, that's
part of the I was going to say the fun
of it, but but the fact that, you know, even
though two people might have the same sort of genetic makeup,
the way that things go aren't necessarily the same, but
I guess that's part of the quote unquote fun of it.
S2 (05:47):
Yeah. No, it's definitely, you know, huge challenge for us. Um,
but but you're right. It's that thing of we often
talk about inherited retinal disease as being very attractive for researchers,
because it's usually a single gene that is causing the condition.
It means that we can look at things like gene
therapy and different treatments. But I think, yeah, you're probably right.
(06:08):
You know, it is, um, that case that is never
going to be a one size fits all for everyone.
And so it means that we have to be really
clever in the way that we think about these conditions
and the treatments that we're developing to try and help
as many people as we can.
S1 (06:22):
And the sort of generic genetic therapy side of things
that that's the biggest hope. I mean, in terms of
lifestyle and stuff like that, we hear about the sort
of differences that can make with things like macular degeneration
and other conditions, but with an inherited retinal disease, you
know that that lifestyle is obviously important for lifestyle, but
maybe not for the disease itself.
S2 (06:43):
So there's a couple again. Again, um, you know, there's
different subtypes of inherited retinal disease. So there's a few
where you'll eat your diet. And the things that you
do can make a difference. So one of the big
ones is is a condition called Refsum disease. And with
Refsum disease, um, you do need to watch the diet
that you have and that can help to slow down
the disease progression, but generally for a lot of inherited
(07:06):
retinal diseases. The gene is the overpowering part of it,
you know, so it's it's sort of unfortunately, there's not
much you can do for a lot of these irds. Uh,
we always recommend, you know, a healthy, balanced diet, lots
of leafy green vegetables, things like that. Protecting your eyes
from the sun with sunglasses, those sort of common sense things.
But you're right. In terms of targeted therapies, we are
(07:27):
looking more at can we actually change the gene that's
causing the problem? And if we can't do that, is
there other things that we can do to protect the retina?
And so many of your listeners might have heard of
a trial that was run by a company called an
acuity recently, which was looking at an antioxidant, um, tablet
that people were taking and that has been shown to
(07:48):
slow down the progression of usher syndrome and the vision loss. Uh,
but what we are really trying to do now is,
you know, try and stop it in its tracks. And
if we can change the genes or change the process
that the genes develop into a protein, then hopefully we
can try and, you know, make a bigger difference.
S1 (08:08):
And that's, I guess a bit of a target of
a number of different diseases, not just retinal diseases, indeed,
not just eye diseases. That kind of approach.
S2 (08:15):
Absolutely. And I think that's one of the really exciting
things being in this field of research, actually, when we
go to conferences, we're there with, you know, genetic testing
and genetic engineering researchers from cancer fields and heart fields
and all sorts of other researchers, too, because we're all
trying to do the same thing in terms of, you know,
correcting faults in our genetic information. And so we are, um,
(08:39):
slightly challenged in usher syndrome because the gene for usher
syndrome is quite large. So it means that we can't
some of the simpler ways of doing, um, gene therapy,
we can't do for usher syndrome. And so we have
to be a little bit more clever. And so that's
where this international multidisciplinary collaboration is great because we learn
from each other in ways to develop those other therapies.
S1 (09:01):
When you say like you mean physically large?
S2 (09:03):
Yeah. So? So the easiest way to do gene therapy
is if you've got a problem with your genes, you
can get a correct version of that gene and pop
it into a virus, which we've injected into the eye.
So it's very it sounds very science fictiony, but basically
what it does is it pops it into the eye
and then spreads that into the different cells in the
(09:23):
retina to, to restore or make their function better. The
problem with the usher syndrome gene is it's too big,
so we can't actually fit it inside a virus to
do that. Hey. Wow. Yeah. And so what we can
do is we can do a few different clever things
so we can cut the gene in half and then
still use that way of getting into the eye. So
still use the viruses. Or the other thing that we're
(09:45):
doing a lot at Sierra is actually looking at whether
you can edit the gene. So rather than just putting
a whole new copy into the eye, can we change
the genetic information that is already in the eye? So
it's um, it is quite mind blowing to think about
the different ways of of doing these treatments. But I
guess the take home message is that for usher syndrome,
(10:08):
we do have to be a little bit more, um,
clever in the ways that we try and target those mutations.
But we've got multiple streams of research happening in that space.
S1 (10:17):
That boggles the mind, because you hear about how small
viruses are and, you know, to be picked up by microscopes, etc..
So if this is a large gene, we can't kind
of fathom how small that large gene is, if I
could put it that way.
S2 (10:30):
Absolutely, absolutely. It's fascinating when you hear our incredibly smart
lab colleagues talking about this, they talk about the ways
that they can use enzymes to cut parts of the genes. And, and,
you know, make it so that it works more effectively
in the eye. And the way they talk about it,
it sounds almost like, you know, it scissors and paper
and and then you sort of take a step back
(10:52):
and go, this is. Yeah, absolutely. You know, Submicroscopic, these
are such tiny scale changes. Um, and it's quite amazing
that we can do them in living tissue.
S1 (11:03):
Maybe nanoscopic might be the word.
S2 (11:05):
Absolutely, absolutely.
S1 (11:07):
I guess funding is so important for research, isn't it?
Because these things, you know, if they come good, there's
obviously potentially a lot of money for the country and
for the organization that strikes that, uh, breakthrough. But to
get there, we need a lot of funding.
S2 (11:22):
Absolutely, absolutely. And it's a huge challenge in the space
of inherited retinal diseases because they are rare conditions. And so,
you know, often when we're going for big national grants, uh,
you know, we are competing against, you know, areas like
cancer research and things, which, you know, obviously should get
funding as well, but it does make it challenging for us.
And so the way that we try and target that
(11:43):
is obviously we apply for all of the competitive grants
we can, but we also do call out to the community, um,
at times and say, you know, if people are interested
and would love to see this research accelerate. Um, we
always are incredibly grateful when people are happy to donate
as well to our cause.
S1 (12:01):
We'll put the details on our show, notes about your website, etc.
and I guess World Sight Day. This is Usher's syndrome
that we're or that you're targeting or talking mainly about,
but world sight. That's a great day to kind of, um,
you know, raise the awareness of of things like Usher's
syndrome and other inherited retinal diseases, indeed, other eye conditions.
S2 (12:20):
Absolutely, absolutely. And I always talk about, you know, this
is kind of for me, it's World Sight Month, right?
We had we had World Retina Day the other day.
There was World Usher Syndrome Awareness Day as well. So yeah,
World Sight Day is is such an important day to
us that work in this space. Um, and it's really
a great day to, I guess, acknowledge how far we've
all come, uh, in terms of awareness, where the research is,
(12:41):
where the support is. And, um, yeah, we're just excited
to see it continue to grow.
S1 (12:45):
And it's going to be really unfair of me to
ask what about in terms of breakthrough? But but I
guess every day there's a chance and, you know, the
fact that these things are probably unpredictable again, makes it
part of the excitement of working in this area.
S2 (12:57):
Yeah, absolutely. And I think what I really love as
well is I love all the offshoots of our research. So,
you know, our ultimate goal obviously, is, is to come
up with treatments for these conditions. But we do a
lot of research into, you know, how people can live
most comfortably and happily with the conditions, you know, what
are the supports we can give people low vision aids,
(13:17):
all of those sorts of things as well. And so
it is a really exciting and growing space of research.
And so I guess for all the listeners know that
there's a lot of people working to, to to do
as much as we can for, for these conditions.
S1 (13:31):
Just as we are. And I know there's a couple
of lovely individuals that are kind of highlighted in one
of your newsletters that live with Usher's syndrome, a, a
15 year old, a 28 year old. And it's, you know,
I guess it's those sort of messages that really get
through because, you know, if there's someone in our family
or in our circle of friends that is that kind
of age, and we think, well, if it was them,
(13:52):
what would we be thinking? It's a a great way
to get that message across.
S2 (13:56):
Absolutely. And and look, we're we obviously are so grateful
for for them sharing their stories and for those. Um,
if people get a chance to have a look, there
is a video on our website where who's the 15
year old? Um, I love what he says. He says,
you know, we have usher syndrome. We have cochlear implants
for the ears. You know, let's let's fix the eye.
Let's get on it. And I really I love that
(14:16):
it's it's, um. It's so true. This is what we
need to target next.
S1 (14:19):
Well, I hope one day we're talking about that. Lauren.
In in real life.
S2 (14:22):
Me too. Me too.
S1 (14:24):
I'm going to catch up to all those at the
center for our research. Keep up the tremendous work. We'll
put details up with our show notes. And if people
can find a few dollars to give, who knows? That
could be the the thing that makes the next breakthrough happen. Uh,
happy world, a Happy World site month. And, uh, I
look forward to the next time we speak so much.
S2 (14:41):
Peter.
S1 (14:42):
It's Professor Lauren Acton there. What a what an energetic
and a very positive person. Great to have Lauren on
the program. That's Lauren Ayton who professor Lauren Nation am
from the center for Eye Research. Talk about World sight
Day and in particular the research into usher syndrome.
Well, World Sight Day, October 9th. Depending on when you
hear this interview, maybe you've experienced the day already, or
maybe you're about to. Anyway, let's chat about it with
Professor Lauren. I am from the center for Eye Research. Lauren,
always great to catch up. Thanks so much for your time.
S2 (00:28):
Always great to talk to you, Peter. Thank you for
having me on.
S1 (00:30):
Just about your focus, if you like, for World Sight Day. Yeah,
you have a bit of an emphasis on usher syndrome.
S2 (00:36):
We do this year. We do. So we, um, have
had a lot of years of World Sight Day where
we have had a focus on inherited retinal diseases. And
this year we're, I guess, targeting an even more and
really trying to raise awareness of usher syndrome. And for
those of your listeners who haven't heard of Usher syndrome before,
it's actually the most common syndromic form of inherited retinal disease.
(00:57):
So it means it affects both the eyes but other
parts of the body. And in the case of usher syndrome,
it's mainly hearing and balance that can be affected as well.
S1 (01:06):
So what about in terms of when it's diagnosed or
how easy is it to diagnose?
S2 (01:10):
It's a really great question, Peter. So it's actually changed
a lot recently. So historically what would happen is and
I should caveat this, that there are different subtypes of
usher syndrome. And everyone has a different journey. But for
one of the subtypes often children are born deaf. And
so that's picked up in their newborn screening. And what
happened historically is that those kids grew up with a
(01:32):
hearing loss, but they didn't start losing their vision until
they were in late primary school. So roughly around ten
years of age. What's happened in the last few years
is that we now have genetic tests that we can
do to find out if a child does have usher syndrome.
So it's completely changed that. So if a child is
picked up as being deaf at birth, they'll undergo a
genetic test. If the parents agree to look for other
(01:56):
conditions and other causes of hearing loss. And so often
families will then realize their child has usher syndrome as
a newborn. And as you can imagine, that then, you know,
raises a lot of, um, support needs really for the family,
you know, how do you best raise that child when
their vision is normal for the first ten years, and
then we'll start to change.
S1 (02:16):
Well, I learned very early on during this program that
early intervention is such a critical thing. And I guess, okay,
the news might not be good if someone has usher syndrome,
you know, with their diagnosis if you like. But I
guess you can do proactive things to sort of minimize
any damage from it or indeed, you know, give the
child the best chance as far as the start in
(02:36):
life goes.
S2 (02:37):
Absolutely. Now you're 100% right, and particularly with usher syndrome,
because it affects the cells in the ear. And that's
why people lose their hearing. It also affects their balance.
And so one of the biggest things that we can
do for these kids is help them through physiotherapy. So
helping with their balance and their development and things like that.
Obviously we have things like hearing aids and cochlear implant
(02:58):
for hearing loss, which have just life changing. And now
what we're trying to do at Sierra is come up
with the same solutions for vision loss, trying to find
some some treatments that could help people with these conditions.
S1 (03:09):
You talk about the balance? I mean, you just have
to think about it a little bit. I mean, obviously
in terms of falls and things that can happen from that,
that is such a critical thing as well.
S2 (03:18):
Absolutely, absolutely. And I think quite often people don't realize
how much balance affects so much of your development. So,
you know, if you're a baby, learning, learning to walk
is really hard. Learning to sit, learning to ride a bike.
All of these become really, you know, challenging milestones. And
I guess the flip side is, you know, ones that
the families really celebrate when the kids do get there,
(03:39):
which they can with that support.
S1 (03:41):
Is that the third thing, that you're probably not in
a position to kind of know how much that impacts
on a child's balance, particularly, you know, early on in
life because they maybe can't express it so well.
S2 (03:50):
Yeah, that's exactly right. And, and I think, um, this
is kind of where genetic testing really helps people and
families with usher syndrome, because historically, the parents often weren't
really sure why the child was struggling to hit some
of those milestones. Whereas now, if you know that this
is the syndrome that that they're living with, uh, yeah.
Like you said before, you can target the early interventions.
(04:10):
You can get them the help they need to be
able to develop as they need to.
S1 (04:13):
Now it's a degenerative disease. So, you know, sad in
a sense, the longer it goes, the worse the symptoms get.
Would that be fair?
S2 (04:21):
Yeah. Yeah. And again yeah there's there's all sorts of
different subtypes of ushers. But um, often we do see that,
that the um, particularly the vision loss, you know, is
a form of retinitis pigmentosa. So most of our listeners
will have heard of RPE before. Yeah. And so very
much follows that the sort of similar, um, changes that
we see in RPE. What we are able to do is,
(04:43):
is obviously monitor people over time to sort of see
how that changes. And as I mentioned before, we're obviously
then trying to find ways to intervene and and try
and slow that down.
S1 (04:53):
One of the things I was going to ask you
was that I've spoken to people with usher syndrome and
their hearing and, um, sight deteriorates at different rates in
different people. Is that part of it, the subtype kind
of complications, if you like.
S2 (05:05):
That's exactly right. So there's all sorts of different genes
that are affected and different subtypes. And interestingly, even people
that have the same type of gene variant can, can
express in different ways. And so, you know it, it's
all of these inherited retinal diseases. Keep us guessing that's
for sure. There's no clear answer. If you have this
this is what you're going to experience. But if we
(05:26):
know the subtype, we can give people a rough idea of,
you know, the potential times that they might experience some
of these changes.
S1 (05:33):
I guess, from a professional point of view. Lauren, that's
part of the I was going to say the fun
of it, but but the fact that, you know, even
though two people might have the same sort of genetic makeup,
the way that things go aren't necessarily the same, but
I guess that's part of the quote unquote fun of it.
S2 (05:47):
Yeah. No, it's definitely, you know, huge challenge for us. Um,
but but you're right. It's that thing of we often
talk about inherited retinal disease as being very attractive for researchers,
because it's usually a single gene that is causing the condition.
It means that we can look at things like gene
therapy and different treatments. But I think, yeah, you're probably right.
(06:08):
You know, it is, um, that case that is never
going to be a one size fits all for everyone.
And so it means that we have to be really
clever in the way that we think about these conditions
and the treatments that we're developing to try and help
as many people as we can.
S1 (06:22):
And the sort of generic genetic therapy side of things
that that's the biggest hope. I mean, in terms of
lifestyle and stuff like that, we hear about the sort
of differences that can make with things like macular degeneration
and other conditions, but with an inherited retinal disease, you
know that that lifestyle is obviously important for lifestyle, but
maybe not for the disease itself.
S2 (06:43):
So there's a couple again. Again, um, you know, there's
different subtypes of inherited retinal disease. So there's a few
where you'll eat your diet. And the things that you
do can make a difference. So one of the big
ones is is a condition called Refsum disease. And with
Refsum disease, um, you do need to watch the diet
that you have and that can help to slow down
the disease progression, but generally for a lot of inherited
(07:06):
retinal diseases. The gene is the overpowering part of it,
you know, so it's it's sort of unfortunately, there's not
much you can do for a lot of these irds. Uh,
we always recommend, you know, a healthy, balanced diet, lots
of leafy green vegetables, things like that. Protecting your eyes
from the sun with sunglasses, those sort of common sense things.
But you're right. In terms of targeted therapies, we are
(07:27):
looking more at can we actually change the gene that's
causing the problem? And if we can't do that, is
there other things that we can do to protect the retina?
And so many of your listeners might have heard of
a trial that was run by a company called an
acuity recently, which was looking at an antioxidant, um, tablet
that people were taking and that has been shown to
(07:48):
slow down the progression of usher syndrome and the vision loss. Uh,
but what we are really trying to do now is,
you know, try and stop it in its tracks. And
if we can change the genes or change the process
that the genes develop into a protein, then hopefully we
can try and, you know, make a bigger difference.
S1 (08:08):
And that's, I guess a bit of a target of
a number of different diseases, not just retinal diseases, indeed,
not just eye diseases. That kind of approach.
S2 (08:15):
Absolutely. And I think that's one of the really exciting
things being in this field of research, actually, when we
go to conferences, we're there with, you know, genetic testing
and genetic engineering researchers from cancer fields and heart fields
and all sorts of other researchers, too, because we're all
trying to do the same thing in terms of, you know,
correcting faults in our genetic information. And so we are, um,
(08:39):
slightly challenged in usher syndrome because the gene for usher
syndrome is quite large. So it means that we can't
some of the simpler ways of doing, um, gene therapy,
we can't do for usher syndrome. And so we have
to be a little bit more clever. And so that's
where this international multidisciplinary collaboration is great because we learn
from each other in ways to develop those other therapies.
S1 (09:01):
When you say like you mean physically large?
S2 (09:03):
Yeah. So? So the easiest way to do gene therapy
is if you've got a problem with your genes, you
can get a correct version of that gene and pop
it into a virus, which we've injected into the eye.
So it's very it sounds very science fictiony, but basically
what it does is it pops it into the eye
and then spreads that into the different cells in the
(09:23):
retina to, to restore or make their function better. The
problem with the usher syndrome gene is it's too big,
so we can't actually fit it inside a virus to
do that. Hey. Wow. Yeah. And so what we can
do is we can do a few different clever things
so we can cut the gene in half and then
still use that way of getting into the eye. So
still use the viruses. Or the other thing that we're
(09:45):
doing a lot at Sierra is actually looking at whether
you can edit the gene. So rather than just putting
a whole new copy into the eye, can we change
the genetic information that is already in the eye? So
it's um, it is quite mind blowing to think about
the different ways of of doing these treatments. But I
guess the take home message is that for usher syndrome,
(10:08):
we do have to be a little bit more, um,
clever in the ways that we try and target those mutations.
But we've got multiple streams of research happening in that space.
S1 (10:17):
That boggles the mind, because you hear about how small
viruses are and, you know, to be picked up by microscopes, etc..
So if this is a large gene, we can't kind
of fathom how small that large gene is, if I
could put it that way.
S2 (10:30):
Absolutely, absolutely. It's fascinating when you hear our incredibly smart
lab colleagues talking about this, they talk about the ways
that they can use enzymes to cut parts of the genes. And, and,
you know, make it so that it works more effectively
in the eye. And the way they talk about it,
it sounds almost like, you know, it scissors and paper
and and then you sort of take a step back
(10:52):
and go, this is. Yeah, absolutely. You know, Submicroscopic, these
are such tiny scale changes. Um, and it's quite amazing
that we can do them in living tissue.
S1 (11:03):
Maybe nanoscopic might be the word.
S2 (11:05):
Absolutely, absolutely.
S1 (11:07):
I guess funding is so important for research, isn't it?
Because these things, you know, if they come good, there's
obviously potentially a lot of money for the country and
for the organization that strikes that, uh, breakthrough. But to
get there, we need a lot of funding.
S2 (11:22):
Absolutely, absolutely. And it's a huge challenge in the space
of inherited retinal diseases because they are rare conditions. And so,
you know, often when we're going for big national grants, uh,
you know, we are competing against, you know, areas like
cancer research and things, which, you know, obviously should get
funding as well, but it does make it challenging for us.
And so the way that we try and target that
(11:43):
is obviously we apply for all of the competitive grants
we can, but we also do call out to the community, um,
at times and say, you know, if people are interested
and would love to see this research accelerate. Um, we
always are incredibly grateful when people are happy to donate
as well to our cause.
S1 (12:01):
We'll put the details on our show, notes about your website, etc.
and I guess World Sight Day. This is Usher's syndrome
that we're or that you're targeting or talking mainly about,
but world sight. That's a great day to kind of, um,
you know, raise the awareness of of things like Usher's
syndrome and other inherited retinal diseases, indeed, other eye conditions.
S2 (12:20):
Absolutely, absolutely. And I always talk about, you know, this
is kind of for me, it's World Sight Month, right?
We had we had World Retina Day the other day.
There was World Usher Syndrome Awareness Day as well. So yeah,
World Sight Day is is such an important day to
us that work in this space. Um, and it's really
a great day to, I guess, acknowledge how far we've
all come, uh, in terms of awareness, where the research is,
(12:41):
where the support is. And, um, yeah, we're just excited
to see it continue to grow.
S1 (12:45):
And it's going to be really unfair of me to
ask what about in terms of breakthrough? But but I
guess every day there's a chance and, you know, the
fact that these things are probably unpredictable again, makes it
part of the excitement of working in this area.
S2 (12:57):
Yeah, absolutely. And I think what I really love as
well is I love all the offshoots of our research. So,
you know, our ultimate goal obviously, is, is to come
up with treatments for these conditions. But we do a
lot of research into, you know, how people can live
most comfortably and happily with the conditions, you know, what
are the supports we can give people low vision aids,
(13:17):
all of those sorts of things as well. And so
it is a really exciting and growing space of research.
And so I guess for all the listeners know that
there's a lot of people working to, to to do
as much as we can for, for these conditions.
S1 (13:31):
Just as we are. And I know there's a couple
of lovely individuals that are kind of highlighted in one
of your newsletters that live with Usher's syndrome, a, a
15 year old, a 28 year old. And it's, you know,
I guess it's those sort of messages that really get
through because, you know, if there's someone in our family
or in our circle of friends that is that kind
of age, and we think, well, if it was them,
(13:52):
what would we be thinking? It's a a great way
to get that message across.
S2 (13:56):
Absolutely. And and look, we're we obviously are so grateful
for for them sharing their stories and for those. Um,
if people get a chance to have a look, there
is a video on our website where who's the 15
year old? Um, I love what he says. He says,
you know, we have usher syndrome. We have cochlear implants
for the ears. You know, let's let's fix the eye.
Let's get on it. And I really I love that
(14:16):
it's it's, um. It's so true. This is what we
need to target next.
S1 (14:19):
Well, I hope one day we're talking about that. Lauren.
In in real life.
S2 (14:22):
Me too. Me too.
S1 (14:24):
I'm going to catch up to all those at the
center for our research. Keep up the tremendous work. We'll
put details up with our show notes. And if people
can find a few dollars to give, who knows? That
could be the the thing that makes the next breakthrough happen. Uh,
happy world, a Happy World site month. And, uh, I
look forward to the next time we speak so much.
S2 (14:41):
Peter.
S1 (14:42):
It's Professor Lauren Acton there. What a what an energetic
and a very positive person. Great to have Lauren on
the program. That's Lauren Ayton who professor Lauren Nation am
from the center for Eye Research. Talk about World sight
Day and in particular the research into usher syndrome.
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