Hello everyone hopefully we are now
going live to Project Sleep's Facebook
page I know it takes people a few
minutes to find us I am here in Los
Angeles I'm Julie Flygare, the president
and CEO of Project Sleep and we have
actually two very special guests with us
right now up in Palo Alto, Dr. Mignot
and Watson! Say hello. Hello! 
Thank you guys for
joining us I know it takes people a few
minutes to find the video so as people
are catching up and and getting logged
in and finding us here I just wanted to
mention a few kind of like housekeeping
things about the video please remember
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love for you to please share the video
and comment where you're watching from
it's really fun to see where people are
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they're awake I hope that the you guys
will comment in to say where you're
watching from and as things are
resonating with you please do you know
type in some comments it's really fun to
see afterwards and please remember that
we're also doing this for educational
purposes so we're excited to share well
Dr. Mignot really will be sharing some
important updates from the narcolepsy
research field but we can't provide
individual advice so if anything in our discussion
today sparks anything any questions
about your own medical situation please
reach out to your sleep specialist or
your you know medical health
professional we will take a few
questions at the end hopefully so you
know listen to our discussion and if any
questions are coming up that we haven't
answered please type those over to us
and we should be able to answer a few
questions at the end so let's see with
that I was just going to go ahead and
introduce dr. minyak I'm sure many of
you are already familiar with him and he
really is the man that needs no
introduction
he is our narcolepsy wizard and to many
people around the world a big hero but
let's see I just need to pause for one
second because I am not sure if we are
actually broadcasting right now if
people are able to see us it does say we
are live all right one second some it
says life on Facebook on my yeah it
doesn't mind too so I just need to go
ahead and double check that people are
able to see us hmm that is strange
I'm just hopefully getting word from
okay all right people can see us whew
all right Thank You Meryl, Thank You
Tracy, so we are alive okay so I will
just share a little bit about dr. Mignot's
background before we get it started with
the discussion Dr. Emmanuel Mignot
is the Craig Reynolds professor of sleep
medicine at Stanford he received his MD
and his PhD from Paris five and six
University in France he practiced
medicine and psychiatry in France for
several years before serving as a
visiting scholar at the Stanford Sleep
Disorders Clinic and Research Center he
joined the faculty and became a director
of the Center for narcolepsy in 1993 and
he was named professor of psychiatry in
2001 and later served as the director of
the Stanford Center for Sleep,
Sciences and Medicine he has received
many more Awards than I could ever you
know go over and he's authored and
co-authored over 200 research papers and
his current research is mostly focused
on the neurobiology genetics and
immunology of narcolepsy, a disorder
caused by hypocretin/orexin cell loss
with indirect interests in neuro-
immunology of other brain disorders. So
we were just so excited to have Dr.
Mignot take some time to give us an
update. Last we did a broadcast together
we were actually together up in Stanford
in September of 2018 so it's been almost
2 years now so we're really excited to
you know hear what has been the updates
since 2018 because it's actually been
a lot of great progress so before we get
started with some more of that science
though how are you doing Dr. Mignot with
this shelter in place Thank You Julie
I'm doing quite well actually it hasn't
slowed down I mean I'm working as hard
as ever you know it looks I'm a little
zoom doubt because you know I go from
zoom to zoom but a lot of fact what I do
is to talk to student and do some data
analysis and actually it can be done
from remotely so it it hasn't slowed
down the research too much oh that is
really good to hear yeah um I heard you
maybe have been doing some new exercise
of course yes no no I mean yeah you have
to make sure that when you're confined
like this I I like to go out but
unfortunately I'm doing yoga online but
it's so I do my best to stay in shape
that's very important
yoga especially fun from narcoleptic
patients yeah I do I'm doing a lot of
Zumba right now
so it's also you know via zoom but I
prefer epoch but you know so I don't
know if you guys know Dr. Mignot and I
were both in Australia five years ago
for a wonderful conference hosted by
narcolepsy Australia and it was I just
checked it was the first week of May in
2015 and this is where I learned that
dr. minyak is quite the dancer I don't
know I do my best but it's true as I
enjoy it but yes the Australians hosted
a big dance a big fancy dinner party and
dance the Saturday night of the
conference and dr. minyak was right out
there with everyone else dancing away so
I mean in France we I think we danced a
little bit more source that comes a
little bit from my education you know I
guess we often invite each other for
this parties where people dance I don't
think it's as common here yeah it's not
it should be great and how is how is
what's in doing there what son is doing
well oh but I speak I need to brush his
teeth not this but no he's doing quite
well he's very happy because we are here
all the time and you know so I think
it's even better for him so yeah is this
really it's really here nice I mean as
you probably know in this
shelter-in-place it's fantastic to have
a dog because that's the only excuse for
going out and we all you know crave
going out a little bit so you know he
works a lot and since he has very for
for very small legs you know it has to
work quite a bit every day but that's
good
and I don't know if everyone knows that
Dr. Mignot's dog Watson does have
narcolepsy with cataplexy so our houses
cataplexy I mean it's it's still the
same and I think it's hardest when we
walk actually for a long time then at
the end sometimes it's just exhausted
sleepy and you just can't move anymore
but the good news about Chihuahua part
is that it's really easy to carry and
it's very easygoing so it's not a big
problem though we can carry him if he's
tired which was not the case for the
other dog before it was really
exhausting when they had too much
cataplexy or were too tired yeah yeah
yeah not to appreciate it very she was I
would never have I I don't think I would
ever have considered the Chihuahua my my
dogs before we're like attack soon and
of course you probably knew bear see the
Schipperke
and they're much more high-maintenance
this dog is like a cat you don't have to
do anything it's just you can carry him
around no it's just easygoing
of course he falls asleep a lot too much
but that's okay they don't have to do
any social duties you know so it
probably would fall asleep during this
interview because yeah
he has heard it before. Yeah that's true well
with that let's go ahead and get started
and talk about since September of 2018
there's been a lot of advancements in
our understanding thanks you and to some
other research groups in understanding
type 1 narcolepsy with cataplexy and and
you know more about the genetics and
some of the environmental factors so can
you give us an update yes I think now
it's more and more clear that the corpus
of narcolepsy type 1 is really this
autoimmune process where's the immune
systems gets triggered by the fruit and
starts to attack certain pieces of the
foods that we assemble hypocretin or orexin
which is a chemical is a brain that
helps to stay awake and when the immune
system starts to confuse you know the
flu and these cells that produce
hypocretin that destroys them and once
you
don't have hypocretin, this is the cause of
type 1 narcolepsy and that's a
relatively simple. Well you make it sound
simple my goodness um, but for the
environmental factors do you think it's
just flu or could it be other things?
Ah so I we don't know probably flu is a
big one but strep also has been
suggested, strep throat and
I still believe that it's involved as
well said you know if you have the flu
and strep on top of it, it makes it
worse
whether or not we will discover some other
other things that could cause it or
triggers immune response it's always
possible because nature is very diverse
so there must be a lot of different bugs
or virus that may have sequence so I
could look a little bit like hypocretin so
of course you're going to ask me if the coronavirus is going to to trigger
narcolepsy is that right well at some
point yes I was like that yes we
actually someone from the CDC asked me
that question and it's difficult to be
sure but probably not because I think we
would have noticed it before, but it's
not possible to really be sure that it
could not have a sequence inside that
would resemble the hypocretin because one
of the thing we've discovered actually
very recently is that it's quite
difficult to figure out based on the
sequence now just looking at the
sequence of the flu peptides and and the
hypocretin what really resembles 
hypocretin we don't have a good model so
it's more in in three-dimensional space
that it needs to resemble and it's not
very easy to make a model to see what
really resembled hypocretin so it's
always possible that there will be
something in the corona virus that
resemble hypocretin but probably not, you
know. Can you explain that little piece a
little bit over again for me so the flu
has a piece of it that mimics or no not
mimic it looks like a hypocretin cell
yes so exactly what happened is there's
a little piece of the flu that looks a
little bit like hypocretin in its
sequence and its structure so that when
the immune system's immune cells that
are recognizing the virus that takes a
virus they kind of chew it up in small
little pieces and then they recognize
specific pieces and one of these piece
looks like hypocretin so it starts to
attack the virus recognizing this piece
with special receptor and then at one
point we don't exactly know why there is
some hypocretin floating around close by
and it starts to recognize the hypocretin
and then it gets more and more
directed towards hypocretin
and then it starts to think that the
hypocretin is just the flu and as a
consequence it attacks the cells that
produce hypocretin like if they were
flu-infected cells and then at the
end they are all dead and you have
narcolepsy and why is it certain people
that that happens to? So there are
probably many different explanations and
one of them is genetic because the way
our genetic system reacts to flu
infections so to infection is general
it's very personalized and it's very
useful because otherwise if the new flu
was coming about or like the corona
virus for example, we don't know why some
people are very sick and others are
totally fine in fact we know of course
that if you're old and you have a lot of
comorbidity you have a lot more chance
of having a very severe corona virus but
there even kids that's that sometime die
from the coronavirus or young adults
and almost surely it's a genetic because
everyone has a slightly different
genetic makeup that makes them able to
direct immune reaction or against
different pieces of the corona virus and
that makes us better able to fight the
coronavirus if it mutates in different
areas because this way we're not
all attacking the same piece of the
Coronavirus and that's a little bit the
same for the flu and narcolepsy there is
some people that attack more certain
piece of the flu and others  that attack
other pieces of the flu and that depends
of certain of their gene in particular
ones that's called HLA which some of you
that are nerds like me you know know
about it there is a gene called HLA
that predispose to narcolepsy
and this HLA gene has like many many
different variants and there's only one
particular variants that predispose to
narcolepsy
that's called DQB 0602, that 25% of the
population has and you need to have this
particular variant because this
particular variant sees the piece of
the peptide of the flu that looks like
hypocretin, if you
don't have this particular piece of HLA
subtype, which about 25 percent of the
population has, you are going to
bind other pieces of the virus that
don't look like hypocretin, so that's why
at least the genetic play a big role
and I'm sure for coronavirus we're going
to discover the same thing that the
people who are very sick probably have
certainly HLA subtype, for example and
maybe we'll also discover that maybe
some people after Coronavirus would
have strange complication
you know autoimmune disease that's very
possible depending of their genetic
makeup so definitely some is genes also
genes are very important with how we
react to the flu we have even on certain
genes that patient with narcolepsy have
more than controls that process a little
bit differently the flu or makes immune
cell more reactive to the flu and all
this makes you more susceptible to
narcolepsy
and in addition to the genetic we know
that there's just bad luck
that happen because many people get the
flu and many people have the genetic makeup
and only a very small percent get
narcolepsy and the bad luck is at least
partially due to probably the type of
infection you have had in the past
because your immune system learns every
year every time you get a new
you just learned this new flu and it
kind of adapts itself over the years so
the state of your immune system depends
of what you have experienced as infection
since you have been born and that's why
even twins that have exactly the
same genetic if you really look at their
immune system after 15 years it's quite
different so there's definitely your
past you know past history of infections
that also makes you more or less
susceptible to narcolepsy that's why
we even have hope that one day we
might even be able to maybe vaccinate
people to prevent them from developing
narcolepsy because we might be able to
make their immune system go in a certain
direction against the flu that will
avoid them to develop these immune
reactions that is confusing the flu with
hypocretin.  When is that coming?
Ah that's a good question so I think we
could try now, the problem is you know
narcolepsy is not that common and people
are always a bit afraid of tinkering
with nature a little bit you know so is
that worth it to do it, considering that
there are so few people develop
narcolepsy it's very difficult you could
you you never know
by pushing the reaction towards not
narcolepsy, maybe you could create
another problem you can never be
absolutely sure I don't think so and I
think eventually when we'll know more it
will be done but let's say that right
now I think we need to do a little
more research before before doing this, I
think it could be very helpful if for example, Julie, you know your brothers
or sisters, you know, people who are
family members because there's more
chance of developing narcolepsy, we know
that it's not a huge risk it's only
about 1% if it's a brother or sister or
child so it's not like something to be
worried but but 1% is not negligible
so for these people I think
it could be worth it to develop a special vaccine
or something that would that
you could give them when they young and will
avoid maybe same to ever develop
narcolepsy people that have the DQB, that genetic marker
that's still a quarter of all people
right that have that? Yes so I think yeah even
in patients who have a chance of
developing narcolepsy in the general
population it's about one for two to
three thousand people, if you are dqb 0602
positive, it's about one
for 800 people okay still low okay but
if you add all the genes actually
now we are doing that if you add all the genetic
predisposition you could tell actually
exactly the chance everyone has to develop
narcolepsy but still at the end I think
we still would come up with, oh you know,
even if I take your genetic makeup
but it would probably say oh julie has
one for 200 chance of developing
narcolepsy I would never say be able to
say from the genetic, Julie that's it, you
are going to develop narcolepsy
but when you go to one for 200 or one
for 100 like family members or people
with a high genetic loading, it might be
worth it to consider a vaccine slightly
different, and would prevent the
development of narcolepsy but I think it
will take a long time before this is, you
know, done unfortunately. I wish that this
will move faster but I think you have
heard also her or the discussion about
complicated it is to introduce a
new vaccine and of course all of you
knows that there were one particular
vaccines that even triggered narcolepsy
so it's always a risk benefit ratio to
try something new so you there still
needs to be stuff to figure out about
the genetics and about the immune ology
right okay and then it was your right if
we get if we somehow are able to really
understand this process completely you
know we might even be able to see which
one are highly at risk because for
example, there may be some people were
already have those cells that are ready to be
activated by the virus
and could be then, you know, killing hypocretin neurons maybe these people is
only 1 person out of 10 of narcoleptics and
then those we might it might be really
worth it to prevent it so if we could
discover the exact cells in the blood
that are dangerous we might be able to
find a way to avoid them to be ever
activated so you know this is the fun and
also the frustration of research you
know we're it's a little bit like you're
trying to narrow down and narrow down
narrow down until you really get to the
final answer and I think we still have
to learn about the immunology to be able
to really predict who is going to
develop narcolepsy but it might be
possible that one day it will be able to
take a blood sample and say oh this
person is really at very high risk
because they already have the cells that
are dangerous and in those, maybe we could
use a vaccine to prevent it. I just
think it's so fascinating
Dr. Mignot and I had a phone call a few
weeks ago it sparked my idea to do this
broadcast because Dr. Mignot actually
recommended a book to me about five
years ago I think when we were in
Australia called The Great
Influenza and so I'd read that five
years ago, not realizing you know of
course how it would be so relevant, but I
remembered this specific chapter and I
went back and looked at it again, how after the
1918 flu, people, it took a while too,
it wasn't always immediate, but there was
Parkinson's like symptoms and there was
even an  interesting form of schizophrenia
that some people developed and
so you know this idea, I
think, our society hasn't quite caught up
to understanding how flus and influenzas
and that the immune system's
interaction with the brain and
neuroscience, sorry that's my, I'm the
layperson, but... I think you are absolutely right, I want to say one thing about that
is what is the most complicated organ in
the body is the brain, right? I mean we know
super complicated, but actually the immune
system is as complicated because every
minute, you know we have I mean if you
ever take a petri dish and of course I
you spit on it I don't advise you to do
it but a lot of things will grow pretty
disgusting you know Staphylococcus and
oh you know, it's beautiful, but even if
you take like the surface of your skin
we have five more, you have heard that
your microbiome, we have five more
bacteria than we have human cells
so we it's an enormous amount of
bacterias and viruses are always in
constant synergy with you and of course
it's, I'm sorry to say, but I still
believe in natural selection it's kind
of natural selection in action every
second so the day you are dead this
thing's you I mean I'm sorry but you you
just start to watch from the inside
because the bacterias just are not
enough kept you know by the immune
system so we're constantly fighting even
our own bacterias that are friends of
ours we still tell them you know just
don't go too much you know so the immune
system is more kind of a general
equilibrium and sometimes we get this
completely new you know new flu or new
bacterias but it's incredibly complex
it's really a whole interaction with the
outside and I think it's estimated that
there is about 10% of all the genes in
the body that have a role in the immune
system. It's it's absolutely huge so we
are discovering that more and more
disease are going to be related to
infections and in ways that we did not
understand and for a long time, people
have believed that the brain was immuno-
privileged you know this is a story of
mankind as well I mean if you read a lot
of history book you know, we, the man,
thought that we were the
center of the universe, of course,
the earth is in the center and then we
discover we run around the Sun and we
are like a little nothing, then after you
know we probably thought we were,
Europe was the only center of the
universe because
you know and of course that's not true
and then after we believed that we were
you know different from all animals and
we realized that we're the same in our
own animals and then we discovers that
we have a very different conscience and
we're different from animals but now we
are realizing that animals have very
complex behaviors and they I think I'm
sure that animals have you know some
animals can either, one paper
recently came out that suggested
that certain monkeys already have all
the instruments for for language so it's
clear that the more you realize the more
we we see that we are not different from
from animals and, I lost my train of
thought, but I think so the whole point
was that we are really normally with
with the rest of the universe we're just
the little piece oh you were you were
saying that we thought that the
brain was neuro-, oh yeah, it's the same way
of course the brain is considered to gold
organ, oh my god, you know, the brain
that's that's us, you know, but actually I
think we're really under-estimating a
lot what the peripheral body can
do and I wouldn't be surprised for
example if when we
measure proteins or even gene expression
in different parts of the body like the
liver you can actually find many like
about 10% to 30% of the gene or protein
in the liver that change with sleep so
it's like if the liver was sleeping
himself so I think we definitely
overestimate probably a little bit our
brain and the second thing is we have
always kind of looked at it like it's
immune-privileged, that the immune system
didn't go there because it was all
protected because it was so important
because we're so unique and now we
realize that it's not very different
from other organs, that cells of the immune
system go into the brain and they make
sure that the brain is not infected
like the rest of the organs, so the same way
they can be subjected to autoimmune
disease like narcolepsy but it's a
relatively new concept I mean this was
really not believed to be true
even 10 years ago.
So there is a lot more interest in
understanding how the immune system
works in the brain and many people, it is
believed in many many more diseases than
just narcolepsy. Right.
schizophrenia and parkinson's, exactly.
And I've seen that with COVID-19, that there
have been some neurological, you know
they're starting to even report already
on some neurological symptoms... and stroke.
Can you answer for me, can you tell
us a little bit more about what happened
in 2009 and 2010
so you alluded to a vaccine causing
narcolepsy but can you go over just
briefly what happened with the h1n1
flu? Yes so I I think that's good because
maybe I can teach a few of our listeners
about the differences between the corona
virus and the flu, so genetic material
comes in two flavors, you know, DNA and
RNA generally and DNA is what we have in
our cells and RNA, a lot of virus
have RNA instead of their
DNA you know RNA is something we
produce in our body to produce protein
but it's not our genetic materials
that we use to transmit to make babies
you know we use really DNA as a co-
genetic material and the virus like both
the corona virus and the flu are RNA
virus which are actually more common
than DNA virus and ones issue is RNA
virus is that they have to be
transformed into DNA to be reproduced
inside the cell because a virus is like
parasite, what it does is really uncheck
is genetic material and try to use as
much as possible of our own cellular
machinery to reproduce, so it can't
reproduce by itself so in fact a virus
is at the border between being alive or
not you know what a lot of people ask
what it is is a virus or living
organism or not? In theory it's not a
living organism because it cannot reproduce by itself. A bacteria is life because
you know you can reproduce by itself
you give it nutriment and it reproduce
by itself but so far
it can it has to have a host and is
going to use the host machinery to
reproduce itself and when it's an RNA
virus it needs first to be transformed
in DNA and as a consequence one problem
is it mutates a lot because it makes a
lot of errors when it does that so the
RNA virus a little more dangerous
because they mutate more they change
over time more which is good and bad
because at the same time the corona
virus like the flu is going to evolve
probably to be more happy with humans
you know and it's not the advantage of a
virus to kill everyone because it rather
like make them sick and go to the next
person because if you kill everybody you
know it's not good for natural selection
the natural selection it's not going to
function it will immediately die and the
virus will disappear that's why Ebola,
which is so bad, has never been like
a huge epidemic because it's too lethal
but right now we have a new virus
that's at the same time can reproduce a
lot and is also quite dangerous
and yeah
Can you describe about the eight the
h1n1 and what happened? Yes there's a
difference so it's a slight difference
between the flu and the corona virus
also it's technical but that's so
flu is in some ways more dangerous
because it has what we call a segmented
genome that means that the chromosome of
the flu there are several
chromosome instead of being charged one
piece of DNA it's several pieces of DNA
and as a consequence sometimes it it
kind of
get mixed up with another flu from
another species usually swine or bird
and then it re-assorts its' chromosome and
suddenly you have a very very mixed
virus that half bird or half swine
and half human and then this one goes
through the population and that's a new
virus as that can be very dangerous this
kind of we call this of this animal
flu that suddenly goes into humans, it
happens once every 50 years and when it
happened it can be really horrible so
you mentioned the 1918 flu it killed
about a hundred million people so it was
really awful and I think we can learn a
lot from from this to apply to corona
virus. Then there was another flu like
that in 1957 it probably killed about
200,000 people so that was a lot of
people as well. Then there was a flu called
the Hong Kong flu that came in 1968 and
interestingly, so until 2009, the flu that
were circulating was a descendant of this
flu that came from animals that had
adjusted to human so that you know every
year you get to almost the same flu
that just has this new mutation and you
just need a vaccination that changes
a tiny bit and you are relatively
protected already because you have
already seen the flu but then when this
new flu happen and in 2009 there was another one that came out of a swine it can be
very dangerous because you may not have
an immunity and the virus eat much more
nasty as I explained because he has not
adjusted to the host with all this new
mutation and that's what happened in
2009 and we had already suspected that
narcolepsy had something to do with a flu
or strep throat because we had noticed
that in young kids that develop
narcolepsy very often they had upper
airway infections or strep throat and
then they develop narcolepsy during the
summer so in kids the narcolepsy is very
often very abrupt. In older adults
sometimes it starts over a period of a
year so it's a little hard to say when
it started but in kids it can be very
very abrupt,
suddenly someone developed narcolepsy
sometimes within a week you know so the
child was completely fine he's seven
years old and suddenly he falls asleep all
the time and gained a lot of weight and
the parents sometimes can tell you, "Oh this
started the week of March 15," you know. 
There's no doubt he was fully fine
before and when we plotted when
narcolepsy started in these young
children it was always starting to the spring and the summer so that with the
strep and so forth we already suspected
that some infection during the summer
were triggering narcolepsy but then when you
had this new flu that happened in 2009
the swine flu, people panicked exactly
like corona virus
except that thank God it was not as bad
as coronavirus. But it started in May in
Mexico you know and initially people
thought it was going to be as bad as the
corona virus because people, what we call the 
"case fatality rate" the
number of people that come sick 
in the hospital and
die was about 0.6%. For Corona virus it's
about 1.2%, so it's higher but that
was still very high but that was
overestimated clearly because they were
probably a lot of people that had it
that never had symptoms and but still
people really thought my god new flu is
going to be like 1918 and that's why
they pushed this particular vaccine
very very quickly
and unlike corona virus, it's a
little bit better because the flu we
already create a flu vaccine every year
with these old strains that circulate so
creating a flu virus with a new strain
it's not that hard it's a little bit
like plugging in, the same process
with a different flu so they really
hurry the vaccine very fast
from May, so they could get it in
December because they were very afraid
of the following winter but then there's
one particular company that made a
particular flu that we don't really
understand, flu vaccine, in Europe called
Pandemrix and you've heard of it it was
I believe probably a bit too strong and
very special and I think we actually
found maybe we have an idea 
maybe of why it was particularly bad I
think one of the ways the protein of
the virus were extracted maybe created
more of a problem and it seems to have
triggered a lot of cases in Europe but
the virus itself also increase the number
of cases so clearly it was just a virus
that sometime was confused with hypocretin but with a vaccine that maybe was
a bit stronger and the composition a bit
different this effect was even magnified
so a lot of people developed narcolepsy
after so this particular vaccine only in
Europe so of course now we are in a little
bit in the same situation, so now
since 2009 every year you are getting
vaccinated I hope because I'm totally
pro-vaccine because the flu still kills
you know 25 to 50 thousand people every
year especially old people and you are
being vaccinated with a descendant of
this h1n1 swine flu you know
there's just a tiny bit of changes that
are accumulated at the last 20 years since, 10 years sorry, you know so
they grow in eggs the descendant to
be as close as possible of what
circulates now but it's very similar to
what it is and it's also a descendant
second strain that is put in is the
Hong Kong flu which is from I told you 1957 that is
still circulating that's called h3n2 and then you get another
influenza B but that's not very important so
that every year that's what you get as kind of a booster
and that everyone
is waiting for new pandemic that will
happen sooner or later the flu
sometime, people are terrorized
especially about the bird flu because
the bird flu has never really passed
into human but if you get a bird flu
usually you can get sick of a bird flu
but and you have 50% mortality so it's
terrible
however you cannot pass it to another
human you know for that you would need
to probably be infected at the same time
with a human flu for this kind of
recombination to occur and this has never
happened but people are very
worried in fact certain agency like
Barda have spent a lot of money to try
to make sure that if this ever happened
we would be ready to create a vaccine
against a new flu like that. Of course
nobody expected the corona virus so and
I can tell you more about the corona
virus if you want to. Well so we won't
know when another flu I mean I
understand better from what you've just
said that the swine flu from 2009 was
this new you know thing we won't know I
guess whether Corona or any of the bird
flu, if any of those are gonna cause an
upsurge in narcolepsy until we're able
to do that 3d modeling yes you mentioned
earlier? Yes, you're right but in general you know it has more
chances to be a flu because a flu looks
like a flu and we know that the flu is
is resembling, or certain pieces of the flu
is resembling you know hypocretin
so the probability that a piece of corona
virus would resemble a hypocretin is
much lower. What about the strep throat? Does strep throat look like the
hypocretin? Ah, the problem is the difference
between the flu and strep is a bit the
difference between the lizard and a
human. A bacteria is a million times more
complex than a virus. Oh.
So to give you an example the virus
like the flu as only I think 13 proteins
13 different protein because it uses, it
just has a minimum needed to reproduce
itself and to use the machinery of the
cells.  Corona virus is actually more
complicated, it's a single genome it's a
30 kb, only one chromosome, so it
doesn't have that problem of of jumping
species the same way it can jump species
but as a block and then recombine with
other species like this one comes from a
bat it's almost you know nine very
similar to a bat and it has a little
piece that some crazy people say was
fabricated in the lab but when you look
at the sequence it's
very similar to the sequence in pangolin
so mostly reasonable people I think
would agree that probably it's a bat
that infected a pangolin that
reinfected the bat that affected the
human, something like that, but where I
went like completely different direction,
I hope this is interesting to you guys.
Yeah I'm sure! We have so
many different things so let's just um
maybe... But it's possible that the corona
virus will produce narcolepsy but
unlikely but what I think is always
possible is that there would be a piece
of the corona virus that would look like
something else in the body and I will
maybe create another autoimmune disease
or also complications that we don't know
that's always possible yeah maybe we'll
never really know. Well I guess while
we're on this topic, I remember you
mentioned that you have been working
possibly I think was it on vaccine and
vaccine side effects. Have you been
helping with any of that as far as Covid-19?
Yes so what we do in narcolepsy is
actually very applicable to corona virus
I mean there it's I still focus on the
flu itself because I'm a narcolepsy
specialist and I want to solve your
problems and but but everything I'm
learning about the different pieces of
the virus and how they interact with the
immune system to produce this reaction
I think is absolutely
hundred-percent applicable to the corona
virus because I'm at the forefront of
understanding this and you know it's
pretty much the same problem I mean in
fact it wouldn't be very difficult for
me technically to do similar studies
with a corona virus trying to understand
how the corona virus is recognized by
different people, it's just that I mean
I'm more focusing on narcolepsy but
knowledge is is is always transferable
so as you said I mean that's why people
are a little worried about creating this
corona virus very quickly vaccine. First
we really, it's very mysterious you know
the immune system for example the bird
flu if you try to create a vaccine it's
very difficult because you can
inject the bird flu and people don't develop immunity
and we don't really know why why you have to
put a strong adjuvant and similarly with
the coronavirus, you never know, I mean
every virus is different and it may behave
differently. There is even cases where
vaccine can produce a worse disease like
I'm sure you have heard that dengue
dengue fever there have been a vaccine
against dengue fever that was developed
and some which is transmitted by
mosquitoes and some people were
vaccinated it produces, the immune system
became more active so you would think
it's good, but actually it was bad
because in some ways it produced an over
activation that actually killed people
so sometimes you really have to be
cautious because you never really know
what you are doing with a vaccine so I
think what right now is very hard
because there is this need to understand
the side effects of vaccines that are
going to be different in every case even
within flu,  between flu, between corona
virus and and then at the same time
there is an urgency I mean everyone is
very scared that the winter will come
and since usually these things are
seasonal that it will become worse and it
would be good to be ready so it depends how
much risk you want to take and in some
ways I think it's what I'm hoping is
that people will realize a little bit
better
people expect things to be perfect but
unfortunately I I always say you know it
is, unfortunately, we always take little
risk if you take an antibiotics if you
take anything there's always a risk
attached to it there's no free lunch in
biology if you have something active it
always can produce a side effect I mean
we just have to make sure and it's so
difficult like for narcolepsy the side
effect of the swine flu vaccine produced
by GSK in in 2009 it was only one for
16,000 children so it's not a huge
number but you cannot test the vaccine
in 16,000 people to try to see if nothing
happen so it's very difficult I think we
definitely need to face more carefully
how we you know and it was six months
later that most of these cases
developed narcolepsy so imagine
now we start with the corona virus, if we
start to vaccinate millions of people we
won't know before six months and maybe
it could be something even worse than
narcolepsy so it's a it's I I have to tell
you, some people must not sleep
very well when they make this kind of
decision. Even myself when I first
discovered the association between the
flu vaccine and narcolepsy I didn't
sleep for days because I was kind of
convinced and I wanted to warn people
but in these cases if you want people
but you are wrong oh my god this is the
end I mean can you imagine you have very
few data there is some cases that have
been reported you think it's true but
you know you can be wrong because the
data is not good enough but if you say
something and it's wrong your career is
destroyed people will say oh my god you're
anti-vaccinator you know anti-vaxxer
you should be killed and if you say
nothing, people could come back to you
what you you said nothing but you
already knew bla bla bla bla so it's
extremely difficult to take this
decision in time of crisis like that
sorry I wanted to make a pitch for all the
people that worked so hard and have
this decision to take you know. Of course.
I just feel I think there's just a sense
from the narcolepsy community and for
myself personally even though I didn't
get that, I already had narcolepsy at
that point, of not letting the knowledge
that has been gained through the
experience in 2009 and 2010 go to waste
so how can we make sure that whatever
has been learned or you guys are still
working on, are you able to communicate
with the people that are working on
vaccines or be part of that process at
all?  Yes I have a I have a the good news
is I have some good friend at the CDC
or people I've worked with and I think
they trust me and they talk to me and I
discuss with them and and I I just give
my opinion and I think they consult me
so I think that's good news so bad they still don't give me any funding to do
research but that's a different issue I
think I think people are still have
learned a little bit about this, they
will be I think more cautious but the
problem is sometimes you can't be
cautious if if it turn out to be so bad
you really have to weigh to benefit risk
ratio so it's a it is a very hard
decision but I do believe that the
big problem we have is a problem of
being very short-sighted you know like
for example the coronavirus, we had
SARS, we had MERS,
these where two outbreak of
corona virus that happened before
there were definitely some warning and I
know people who submitted grants to try
to develop you know learn how to develop
vaccines for coronavirus that were
rejected you know by NIH I don't know
how many times you know and it's just
absurd because you wait until you have a
crisis and then you put billions and
billions of dollars where they could...
right now I mean you can, you can study
if sleep interact with a vaccine, you
know, like if you are sleep deprived or if
you go more in the sun, I'm sure you can
get funding to see if the vaccine is
more efficacious because they
are just pouring tons of money at the
last minute on things that don't make
sense really. Yeah we're very reactive as
a society. Exactly and that's a really I
think for research it's so important to
go on long haul, I think my story with
narcolepsy and work for 30 years on
narcolepsy and you know there is no
shortcut sometimes you just get some
things that makes you move very quickly
sometimes you just have to just dig your
hole and it's already hard to dig but
then if no one is helping you it's even
harder... Well, we'll get to that in two ways because I'd say that
narcolepsy advocacy is similar there's
no magic cure - you know advancing it
it's a lot of little steps and we're
also using our advocacy to try to make
sure that more narcolepsy and sleep
disorder research is getting funded so
more on that a little bit
but I do want to ask you a little bit
about narcolepsy type 2 and idiopathic
hypersomnia it's really been evolved I
think over the last five years as far as
our understanding of what those
conditions are and you know what can you
tell us about how we're
coming to some better understandings? So
I think we are we are in a very
i'm going to say, maybe I'm not
politically correct here, I don't know
but we're a little bit of -
no it's ok - at a destructive phase. Okay?
What I mean is that we have had a lot of
assumptions, made a lot of assumptions
about what these problems are
whereas we knew absolutely nothing,
like idiopathic hypersomnia is
different from narcolepsy without cataplexy...
it's very clear from more and more
studies there's no real limit you know
it's like (I'm sorry for the noise) it's
almost like the flip of a coin, you do an
MSLT which is a test we use, sometimes
there is SOREM sometimes there is no
SOREM. If you don't have narcolepsy type 1, it can be just random, and it's
pretty awful because some people are
treated because they are called
narcolepsy type 2 and others it's
much harder with the insurance whereas
they have exactly the same problems they
suffer as much so everyone realized that
there is a problem and that we need to
come back and figure out a way to better
study this condition and better realize
where the subgroups are, that doing this
MSLT to separate the subgroups is
probably not the right way to do it. Nut
the problem is like like for in a lot of
cases when you come back it's also a
little hard I mean you you just have to
two step back to better jump, as we say,
and that's exactly where we are but I
think we have a lot more hope and one
of the big hope I have is thanks to new
technology. I mean I haven't discussed
that much in this talk but I have a
little piece of myself that does a lot
of machine learning and and 
high computer science as applied to
narcolepsy and for example now we can
diagnose narcolepsy based on a night
sleep study without doing the MSLT
just by the brain waves during the night
we don't really need the MSLT even so
it's not yet in clinical practice we
feel very strongly it works as well. So
in theory you could just do a
sleep study like for sleep apnea and
know if you have narcolepsy so that's
already a big progress but we also know
that just doing a sleep study is not
the best way. The best way would be to
give you something that you can wear for
three days continuously move around do
whatever you want go to bed like a
little cap and then we will see exactly
how is your sleep and your wake in a
natural environment then we really know
your problem. I'm a big believer in how
people live is really the key, right?
And I think we need to apply this kind
of new technology to narcolepsy and 
hypersomnia. For narcolepsy type 1, it
won't change that much because we have
very good diagnostic procedure even the
MSLT works well but I think for hypersomnia
we will probably realize that there's
very different types of waves in
different people and I'm sure that there
will have different treatment and I
think we'll make a lot of progress so my
opinion for hypersomnia and
narcolepsy without cataplexy is we're a
little bit in a destructive phase but at
the same time with a new technology
that's coming we have the opportunity of
looking at it in a new way that I think
is going to make a lot more difference
in how we treat it and and also the
other positive of course is that we have
all these new treatments coming in I
mean now there is a lot of interest in
helping people who are tired and sleepy and
you know there of course there is drug
to replace orexin/hypocretin
there is  histamine drugs I mean
there's a lot of interest in helping
people with these kind of problems staying
awake but I think right now it's like we
take a dart and then we throw it at the
patient and we just hope it's going to
work and that's pretty much what I say
to my patient if they have narcolepsy
type 1, it's pretty codified,
but for narcolepsy type 2 or idiopathic
hypersomnia it's trial and error.
Of course there is a little bit of
intuition I mean, every doctor will tell
you "Yes you know I do very well what to
do," but the truth they just, it's a little
bit of intuition, but it's not worth much
you know it's really trying, trial and error. I think 
that's true for everyone I mean because
all of our bodies are different, so...
That's true but for narcolepsy type 1
for example you know it's still there's
still like the same biology exactly you
know so the expectation of a response is
much more clear and we see it you
know pretty consistently and of course
when we will have orexin agonist or
hypocretin agonist I mean of course
that we're going to be even more clear
in my opinion. Yeah so I just I'm
so glad that there's more research and
interest in this area because I, for a
long time, felt like most of the research
or all of it was in narcolepsy type 1
which of course is what I have and so
it's important but I know a lot of
people have type 2 narcolepsy and
idiopathic hypersomnia, so there is, it's
a very, I don't know if I would call it
"destructive" but it there is a phase of
movement right now
as far as our understanding. Yes, destructive, 
it is true is not this no yeah I don't
know if destructive is the right term
but I think we are really looking at it
again in a more objective way and and it
is really good I mean I think it's going
to, yeah, I suspect we will define new
types of disease that will be much
better the target or specific medication,
we just need to do more study and by the
way of course I have always been
interested in also idiopathic hypersomnia
and narcolepsy type 2 but the reason I
have not studied that is first that
narcolepsy type 1 seems to be much
better defined so knew it has more chance
to finding a result. I didn't have to do
this what I'm trying to redefine the
problem you know it was already very
well defined and also now it's mostly
solved so I think definitely a lot of
more people including myself are going
to work on these other conditions. 
Good, I like that. You just mentioned a few things
about treatment but let's go over that a
little bit more so there have been a few
treatments that have been recently
fda-approved
over the last year, tell us a little bit about those.
Yes so there's one that's called pitolisant
which is working so, most of the
drugs first I should mention the
drugs that we have right now that work
on narcolepsy they're pretty much
of three classes. One of them is
stimulants like it's a little bit like
amphetamine or modafinil
and they mostly work on dopamine a
chemical called dopamine.
Then there are antidepressants and they
mostly work on norepinephrine and
serotonin and they work on cataplexy so
they are not used as much for idiopathic
hypersomnia even so sometimes it can be
beneficial and saying there is xyrem that
helps people to sleep at night and
clearly these drugs sometime can help
idiopathic hypersomnia or narcolepsy
without cataplexy but as you see they work
on dopamine, norepinephrine certainly
for antidepressant and for GHB/xyrem it is
probably GABA and these new drugs that
are coming, one of them is called Sunosi
which is working both on norepinephrine
and dopamine so it's a little bit
different than modafinil and it
seems to be it's still in the same
class of drugs how it works
then the stimulants but it seems to
be better more effective than modafinil
without having the big problem
of amphetamines that are kind of too
strong so definitely I think it's a drug
that's helping, that will help more
patients than the traditional drug. Then
there is a new drug that works
completely differently that works on
histamine, you all have been taking
anti-histamines and you all know for
allergy and you all know that it makes
you sleep, so this drugs does the opposite 
in the brain but it doesn't make your
allergy worse but it makes you more
awake and it works completely different. Pitolisant?
and that's pitolisant.  So the general feeling
of the drug is that it's a
drug that helps to stay awake and reduce
also cataplexy if you have cataplexy
it's but it's certainly not like a
curative compound you know it can help
some patients and I suspect it will also
help a lot of patients with idiopathic
hypersomnia
and we just need to use it more
to really understand better which
patients would benefit but the big
advantage of it is clearly it is
different, it doesn't work the same way
as amphetamines and all these other drugs,
so I think we already two new
completely new drugs and then finally of
course most exciting for me, is that
there is this new drugs that are coming
that seems to be able to replace orexin/
hypocretin,
which basically are, could replace what's
missing in narcolepsy type 1 and it
seems to be very spectacular in patients
with narcolepsy type 1 it really kind of
makes them completely awake I mean
there's one one study that was done 
(nothing that has been tried
works so well) so there is a study where
they have taken patients with narcolepsy
type 1 and they used a test called the
maintenance of wakefulness test which
you know it's a horrible, it's a torture
for narcolepsy, you ask them to stay
awake for 40 minutes four times a day. A
patient with narcolepsy basically can't
even stay for three minutes I mean in
the dark room like this, you tell them
"stay awake," I mean that's just against a
nature of narcoleptic patients, they fall
asleep in two minutes. After the drugs,
they could stay awake for 40 minutes the
entire time of the test. Nothing that I've
seen ever has been able to do that, so
that's a big hope for patients with
narcolepsy type 1. It's  just starting
right now right? The clinical trials in
the US are just starting. Yes, and the good
thing is that there is another...
it worked also in people with idiopathic
hypersomnia or sleep apnea for example
you know people with sleep apnea
sometime are tired and we can't really
get them back to normal and we don't
really know why but it's clearly not due
to the lack of orexin but it will still make
them more awake as well so it works
also in normal people so I think it
could very well help a lot you know
patients with idiopathic hypersomnia or
narcolepsy type 2, you know, it's not
because it's not the cause of the
problem that it is not effective you know
I mean we use drugs
you know for pain you know like if you
have pain you take opioids or inflammatory
and sometimes they work even if you
don't have an abnormality in your opioid
system I mean, there is symptomatic
treatment so it I think that there's big
hope that this will make a big
difference, and you're right, the clinical
trials are being started. Unfortunately
they were interrupted because of the
covid-19 we can't do anything -
everything was stopped and but I think
they will restart as soon as we are
done I mean for us since Stanford ask
for a lot of paperwork, it just gave us
more time to do the paperwork to start
to the clinical trials. And if people want to look for
clinical trials, clinicaltrials.gov is a
good place to look and search for
narcolepsy and get more information
because it is a great way, unless we have
people that are willing to participate
in clinical trials, we can't get new
treatments. Yes you're right and I like to say what's a
little tough about clinical trials of
course is that, first you may be on
placebo, so you know often always you
have one arm where it's placebo and one
arm what's active and the second thing
that can be very frustrating is that it
may work great but then after, you can't
have the drug, they will tell you "I'm
sorry we need to wait until it's
approved," so sometimes it can be almost
like a a taste of what it's going to be
and then you can't continue but still I
think if we don't have anyone you know
doing this kind of studies and it will
never be available for anyone so that's
why I'm hoping that it will happen and
during the summer because you know the
summer is a good time for example for
for students that are already in college
or it's easier for people to take some
time off you know because since they
have to stop their medication it's easier
for people to do it yeah. Yeah definitely
if you can and that's a good thing that
you can help to advance science and we
always are looking, it's just exciting
that we have clinical trials finally in
the narcolepsy space so Project Sleep will
hopefully get some more information out
to you about what the opportunities are
but yeah right now not so much
we can't be recruiting for clinical
trials at this moment but please keep it
in mind. Is there anything else on
treatments? Yeah no I think no but I
really do think that what I was telling
you about monitoring and being able to
have this new technology, right now the
problem is everyone is measuring sleep
with their watch I'm sure you all have
this "bling, bling, bling," and we know that it
doesn't really work very well because it
measures activity so if you don't move
it says you sleep because it just can't
measure your brain activity but now
there's some new devices that can
measure brain activity and that you can
wear at home and the data could be
directly sent to the you know - to a
clinician and I really hope that in the
next few years we'll be able to have
people really wear these things for
several days and we really see that will
be useful not only for potentially
diagnosing patients you know
understanding really what the nature of
their sleep attacks and and so forth so
when they are spaced out what's
happening in their brain but also
potentially titrate the drug to really
see that it's really helping the
patients on their actual symptoms so I'm
very positive I think the development of
new technology is also going to really
help a lot patients to get better
treated because often we just are
working in the dark you know we just
titrate and some people including myself
we are not always very good judges of
how we feel it's very difficult to judge
really completely how you feel that's
why you know of course when when I talk
to patients I often like if certainly
children it's very helpful to talk to
the parents because sometimes a
perception of the patient is different
you know it's very often patient with
narcolepsy underestimate their symptoms
they all I don't have cataplexy anymore
but in fact you see them having
cataplexy all the time and so having an
objective measure is really helpful and
I'm really hoping that will help to
treat better
patients as well so it's not only
drugs but I think devices are going to
help a lot. That's exciting, that's great, thank you for
sharing that um so I wanted to ask you a
question and that was my favorite
question we got back in 2018 when we did
our broadcast which was: what keeps you
up at night and what energizes you to
get up in the morning? Right now? So what
keeps me up at night I mean I mean for
narcolepsy patients or personally?
I'll go first , how about that? 
Yeah, go ahead.
For the narcolepsy community,
I would say what keeps me up
at night is I think worrying about
whether we're doing enough on the
advocacy front and I know we already
doing a lot and we're doing more and
more and I'm so proud of that but I just
continue to think like you know we focus
a lot of our efforts at NIH as far as
the NINDS which is one of the Institute's
there and now Dr. Mignot research is
actually more you know in immunology
which is actually a different department
or Institute at NIH and we haven't
focused our efforts on that as much so
that's what kind of keeps me up at night
is like are we doing enough to keep up
with you know some of that even though I
know we're doing a lot and then a thing
that energizes me to get up in the
morning is I'm super excited to be
working a lot more and and actually even
talking Dr. Mignot recently about social
support and I just think that the social
experience of narcolepsy has been
under-recognized a little bit like how
Dr. Mignot, you said like we thought like
the brain was the thing you know and
then you realize there's the body and
then I would say there's the body and
then there's also like all the people
around the person with narcolepsy and I
think that the you know the family and
friends and the impact that community
and society has on our experience with
narcolepsy is underrated so I'm really
excited and energized about seeing what
kind of social support
enhancements we can do to help
people more in the future, so there's my
answer so what's yours? So I that's
that's a good point yes I would say is
that definitely what keeps me 
up at night is the funding
it's just like you know we always are
struggling we have to write these grants
and they get rejected by people we don't
know what they are talking about I'm so
sorry but you know for example I told
you this HLA DQB 0602, the last time
I submited on my grand to NIH I mean
there's hundreds and hundreds of studies
have shown that it's like 97% that it's
really all the same disease and one of
the reviewers at all but you know the
disease narcolepsy is complicated it's
not just one mechanism for narcolepsy
type one and it's just you know so you
have people review your grant you take
nine months months of writing it you
submit it and then you have people who
don't know anything that's been ten
minutes and destroy it and then you read
it and you say they're completely
incompetent and you have no way of doing
anything that's really hard and of
course now I should say that my lab
would have died pretty much if I not
have had help from patients with
narcolepsy as well as I should recognize
Jazz Pharmaceuticals they have been
giving me some unrestricted kind of gift
you know and without that I don't think
my lab would be able to continue and
right now unfortunately it doesn't look
like suggest it's going to continue at
least right now so of course what keeps
me at night this I may have to fire
people and and and stop the research you
know I resubmitted grant and we have to
wait so yes that's a constant struggle
of an active researchers and what's
really frustrating too is for me it's
easier to get funding in other areas so
my solution would be to work on alzheimer's. 
Everyone works on alzheimer's
disease and it's easy to get money and
then I will do something else but nobody
care is about narcolepsy nobody knows
anything about narcolepsy so the
reviewers don't care that's it's just it
seems to be so unfair so yes it keeps
me you know up at night is my my own lab
and of course also you are personally
invested with all the students they work
super hard like me and it's so hard you
know to see how they're beaten up by the
system
you really have to be a saint to be a
researcher I mean I have to say but
anyway then what energized me is the
most I mean I have to say still are the
new agonist I mean the I'm so excited
for patients you know if it works as
well as it looks like I mean this is
going to be a real change for a lot of
people and I think we're very close to
really making a dramatic change in the
diagnosis and the treatment of this
disease it'll be so profound that people
who have narcolepsy one has the same
life that people have had it today and I
mean when you think about that it's just
unbelievable I mean it just you know I
have a smile like this because you know
people all this sufferings that will be
gone I think is is is for generations you
know it's not just now it's going to be
forever and that's what's really
exciting about research - is that not
only you can do a lot of good for a lot
of people but also there is this
discovery process which is really
amazing
you know it's discovering something new
it's there's nothing more exciting so I
don't have any problem being excited but
I have to say that the funding is always
Khanna
I'm a little bit like the jackal
normally you know I come from a hole and
then I get another hit and then I could
that's the site but I'm still very
enthusiastic every morning yeah - to
work yeah. I really like how the birds
started chirping behind you as you
started talking about what made you
hopeful so I feel like the birds are on
our side. It has never been a better time
for patients with narcolepsy, the future
is really bright
absolutely I mean there are new treatments
of course you can never tell, there could
be something bad about that treatment and
then we'll go back to square zero,
not zero but we'll have to wait for
another drug but even if the drug from
Takeda you know is not working there's
several other companies that are working
so it will happen I'm pretty sure
because there's nothing fundamentally
flawed about the concept and it seems
that the drug is well tolerated so
it will happen of course I hope it will
happen in the next two years and not the
next five years but I think it's really
exciting and then the understanding of
narcolepsy I think I'm really hoping you
will have a blood biomarker and that we
can really get most people very quickly
and treat them immediately so I hope
that narcolepsy would be, I was going to
say, a thing of the past
but you know I mean some of these things
we forget but before antibiotics people
were dying you know in childbirth like
flies and now that never exist so I
mean what I hope is one day narcolepsy
would be just something that people
treat and you can live a completely
normal life. Yeah and I think that was
really humbling for me to realize when I
first started treatment in 2007 you know
I didn't like I was like ah these
treatments are so challenging and then
when I started studying the history and
realizing that you know how many people
had fought to even make those treatments
available for people like me to be diagnosed
in 2007 and to then be like "oh
these treatments are terrible" like other
people fought so hard for to make those
available and you can see
already the progress I think.. Oh
yes.. in how far we've come, so that's gotta be the
exciting thing is that we can see that
that will happen even more so, let's hope.
Yes the other thing that I think we
need to make progress in which I'm
hoping is recognition of narcolepsy I
mean there are still people who definitely have
narcolepsy that don't know they have it
it's hard because I don't know how to do
it yet you know a lot of people have
done campaigns with, I think we have to
go straight to the public so I really
appreciate a little bit also what
you are doing by the way of course, Julie
because I think the new model shouldn't
be to just try to get doctors to
recognize better narcolepsy, I mean, this is
hopeless
I mean most of the patients that come to
me it's very often it's not the doctor, it is
themselves that figured out what it was. 
I mean it's a different world out there
and I think but still even
with that they're still people who just
don't know they have narcolepsy
I just think we need to figure out
especially in children I think it's
really a problem because children if we
don't catch their disease very quickly
it can be irreversible, you know they may
develop obesity, they can gain a lot of
weight, it's so much harder to bring them
back where they were
you know when they have skid out of the road
you know like miles away you have to
bring them back and it's almost criminal
you know if you don't treat a child
really well from the beginning yeah
perfect segue into what I just wanted to
mention towards the end here so I just
think I will, as Dr. Mignot was
mentioning about awareness, I do have a
few slides I created to share a
little bit about some of what we're
doing in these areas and I just thought
it'd be easier to show you a little bit
so let me see hopefully you'll be able
to see this. I'm going to move. What? Okay.
You go ahead and move. 
Yeah because I was under the sun
since I have, good, go ahead.
So Project Sleep does lot of advocacy and we're
ramping this up so hopefully our efforts will be even
more helpful to people like Dr. Mignot
but other researchers across the country
as well, we have these four principles
that Project Sleep is working on
advancing sleep research, accelerating treatment options, ensuring access to healthcare.
Access and coverage to healthcare is a
newer area that we're actually doing a
lot more work in this year which is
really exciting because especially in
wake of COVID-19, because with so many
people losing their jobs across this
country we need to make sure that people
would be able to continue to access
affordable health care and be able to
you know yeah just have the treatments
they need so we're working more on that
and furthering education awareness and
training so I just wanted to share, you
guys might be familiar with the letter effort
we did in mid-february
late February and that was on the house
side so some of the ways that those
priority you know those big priorities
end up playing out is that we're working
to encourage NIH to continue advancing
the scientific understanding of Sleep
Disorders so that's encouraging more
research funding at NIH 
for researchers like Dr. Mignot but
other researchers across the country and
we actually have had seen some real
success over the last couple years as we
are paying attention to this and we are
talking to our members of Congress about
this, Congress is letting NIH know that
this is important to their constituents
and and we are seeing some more research
funding coming through for narcolepsy
which is really exciting over the last
couple years we are also always looking
to include sleep disorders in the DoD
that's a Department of Defense research
program so that Sleep Disorders and you
know it's being studied at the
Department of Defense. The last thing and
the most important that we're working on
right now is helping to ensure that the
CDC creates a chronic disease education
and awareness program so it actually be
a new program at CDC and we started
working on this last year, we got a lot
of traction on the House but we didn't
get it through the Senate so now we're
working to make sure we get it through
the House and the Senate to create this
program which will be a mechanism that
organizations can apply for to get
funding to fund sleep and sleep disorder
awareness programs. This is really
important because right now the CDC is
actually spending no money zero on sleep
disorders awareness so some of what Dr.
Mignot was mentioning as far as like big
public campaigns educating the
public, educating doctors, educating
educators like teachers, all of that
takes money and right now we have not
had the funding of other areas as far as
that campaign and awareness effort go.
so I just want to mention if you aren't
yet familiar with Project Sleep's
advocacy program these are some of the
things we're working on and we're
hopeful we have some great advocates now
working on the Senate side of these
efforts and hope to have good results
but please get involved in our advocacy
if you haven't already. I also just want
to mention as far as like when Dr.
Mignot mentioned about long delays to
diagnosis, we are doing this story
sharing series right now and they are
weekly right now every Sunday
and we're having our Rising Voices of
Narcolepsy advocates share their story
every Sunday night and so many of the
stories talk about people going over ten
years before diagnosis, so please join us.
These stories are incredibly
heartwarming. These are incredible
people. Lizzy will be sharing her story
on Sunday and if you have missed the
prior ones have the whole series on our
Facebook video library for you to check
out videos right now already so you can
check those out and please you know
share these awareness videos these are
people's stories. Storytelling is one of
the most powerful ways to educate people
and help reduce delays in diagnosis and
also to reduce stigma so we're really
proud of these videos and so if you've
enjoyed this please check out our other
videos. I did mute you Dr. Mignot for a
second, let me unmute you okay there you
are oh I like this this is nice this
window of yours. Oh yes I don't know I
can't see myself but oh yes. Cool, I just did my quick advertisement for Project Sleep's
programming and that's all I wanted to
add at the end, we did have a great
question from the audience ask if
someone has type 2 narcolepsy, could they
develop into type 1? Yes
absolutely
unfortunately but the best way is to
know if they are HLA positive, if
you are HLA negative then the
probability is 0 pretty much but if
you're HLA positive, it's possible,
it usually decreases with, we have been looking at this and it looks
like 50% of people, it's a little more
complicated but some some people can
develop narcolepsy type 1 over time if
they are HLApositive but it's
probably a small portion and it really
depends how long ago the symptoms
started, if the symptoms started like a 1
year ago and starting
with sleepiness then abruptly so I mean
it's not uncommon that cataplexy will
develop later and also symptoms will
develop but if, for example, it's already
five or ten years of having just a
little bit of sleepiness probably that's
less likely. Okay. Because most of the symptoms
that develop was in three years. Okay
that's very helpful.
We have gone way over of the amount of
time that we planned to take of Dr. Mignot's
time today so I think we've, other people
asked questions I think we ended up
answering them I hope and we're just
so thankful to you Dr. Mignot for taking
this time to... No problem, I hope it was helpful
oh it's just such, it's so
unbelievably helpful, I think, hearing
your perspective and thank you, I know I
asked you some tough questions and maybe
we don't know the answers to all the
questions about COVID-19 but I thank
you for the time to even tell us what we
don't know because I think you know
these questions otherwise just kind of
circulate in our heads and it's just
really helpful to know that you know
you're at the forefront of this and and
we will make progress I believe.
Absolutely absolutely so good luck and
and for everyone stay safe you know like
stay away a little longer I think it's
fairly clear that it's probably going to
get better and I think it's really
important to stay safe until it gets
better and after I think, the
second big part would be what happened
next winter you know and we just have to
hope we'll have a vaccine but we just
don't know but at least I think
we are on the way to getting much better
now I think everywhere but it could
still take a you know a month or two
before it disappears in many places.
Yes well I have to say I know it's a
challenging time for so many reasons but
like just staying home actually isn't
that hard for me I mean I already work
from home but I just think it's kind of
like um has made me more okay with when
I take naps and when I sleep and I don't
know maybe it's the I don't always have
a lot of spoons as we talked about with
narcolepsy and so not having a lot of
spoons
it's been really nice it like people are
actually hosting free like dance parties
on a via zoom for free and I
don't have to go to a club or anything I
can just dance right here. That's that's
very good, I mean I think what's very
hard is the economic impact is going to
be mean a lot of people are going to
lose their jobs and there's not much you
know we can do so we we just have to
hope that that that will come back
quickly but otherwise yeah working at
home for me has not been very hard
but I suspect I am one of the privileged
of course. Me too so alright well
everyone stay safe and healthy and sane
and thank you again Dr. Mignot and thank
you all who tuned in around the
world. We will hopefully everyone on Sunday
come join us for our Facebook Live at 8
p.m. Eastern on Sunday. Thank you so much
Julie, it was wonderful, as usual. 
Thank you, Emmanuel. Thank you, bye!
