hi everyone let’s begin our time today by taking a deep breath in and out
by taking a deep breath in and out
by taking a deep breath in and out thank you breathing is one of the most
thank you breathing is one of the most
thank you breathing is one of the most essential life functions for we humans
essential life functions for we humans
essential life functions for we humans good news then that for most of us it’s
good news then that for most of us it’s
good news then that for most of us it’s pretty automatic right you inhale you
pretty automatic right you inhale you
pretty automatic right you inhale you exhale you don’t have to think about it
exhale you don’t have to think about it
exhale you don’t have to think about it no real effort on your part but that’s a
no real effort on your part but that’s a
no real effort on your part but that’s a little more difficult for about 1200
little more difficult for about 1200
little more difficult for about 1200 people worldwide my name is Nico and I
people worldwide my name is Nico and I
people worldwide my name is Nico and I am one of those individuals there we go
am one of those individuals there we go
am one of those individuals there we go what we have is called congenital
what we have is called congenital
what we have is called congenital central hyperventilation syndrome or
central hyperventilation syndrome or
central hyperventilation syndrome or CCHS if you’re looking for a colony
CCHS if you’re looking for a colony
CCHS if you’re looking for a colony central high school I think you’re in
central high school I think you’re in
central high school I think you’re in the wrong building
the wrong building
the wrong building what this means is that when we are
what this means is that when we are
what this means is that when we are sleepy when we are sleeping when we’re
sleepy when we are sleeping when we’re
sleepy when we are sleeping when we’re ill we require mechanical ventilation
ill we require mechanical ventilation
ill we require mechanical ventilation what we call vents there is currently no
what we call vents there is currently no
what we call vents there is currently no cure no treatment for CCHS beyond
cure no treatment for CCHS beyond
cure no treatment for CCHS beyond mechanical ventilation this condition is
mechanical ventilation this condition is
mechanical ventilation this condition is genetic is most often present at birth
genetic is most often present at birth
genetic is most often present at birth and it is lifelong now I’ve lived 29
and it is lifelong now I’ve lived 29
and it is lifelong now I’ve lived 29 years with CCHS dealing with this
years with CCHS dealing with this
years with CCHS dealing with this disability has given me a better sense
disability has given me a better sense
disability has given me a better sense of my own purpose and a better
of my own purpose and a better
of my own purpose and a better appreciation for the abilities of others
appreciation for the abilities of others
appreciation for the abilities of others but also a global community let’s take a
but also a global community let’s take a
but also a global community let’s take a look at this kid this is in fact me what
look at this kid this is in fact me what
look at this kid this is in fact me what happened right how did I get this way so
happened right how did I get this way so
happened right how did I get this way so after we look at the cute blonde hair
after we look at the cute blonde hair
after we look at the cute blonde hair and the chubby cheeks we turn to
and the chubby cheeks we turn to
and the chubby cheeks we turn to something which is decidedly not cute
something which is decidedly not cute
something which is decidedly not cute what is this thing under the neck that
what is this thing under the neck that
what is this thing under the neck that was called the trach and it’s how I was
was called the trach and it’s how I was
was called the trach and it’s how I was venting for the first six or seven years
venting for the first six or seven years
venting for the first six or seven years of my life someone over here said it it
of my life someone over here said it it
of my life someone over here said it it is a trach now when you’re six when
is a trach now when you’re six when
is a trach now when you’re six when you’re seven you don’t really want to be
you’re seven you don’t really want to be
you’re seven you don’t really want to be different right different is bad you
different right different is bad you
different right different is bad you want to be normally you I’m good like
want to be normally you I’m good like
want to be normally you I’m good like everybody else when you’re in
everybody else when you’re in
everybody else when you’re in kindergarten one of your friends has to
kindergarten one of your friends has to
kindergarten one of your friends has to go to the bathroom you have to go to but
go to the bathroom you have to go to but
go to the bathroom you have to go to but at this stage of my development
at this stage of my development
at this stage of my development I was very obviously different not only
I was very obviously different not only
I was very obviously different not only because of my trick but also because I
because of my trick but also because I
because of my trick but also because I had a dedicated nurse follow me around
had a dedicated nurse follow me around
had a dedicated nurse follow me around me specifically me Nikko in elementary
me specifically me Nikko in elementary
me specifically me Nikko in elementary school and also in junior high now think
school and also in junior high now think
school and also in junior high now think back to kindergarten when you came in
back to kindergarten when you came in
back to kindergarten when you came in from recess you probably helped make
from recess you probably helped make
from recess you probably helped make naptime right lights were off you had
naptime right lights were off you had
naptime right lights were off you had some cots could lay on the floor and
some cots could lay on the floor and
some cots could lay on the floor and you’d go to sleep
you’d go to sleep
you’d go to sleep and I could not do that it was continued
and I could not do that it was continued
and I could not do that it was continued in high school in gym class I couldn’t
in high school in gym class I couldn’t
in high school in gym class I couldn’t do a swimming unit without my own
do a swimming unit without my own
do a swimming unit without my own personal lifeguard one year I had a fee
personal lifeguard one year I had a fee
personal lifeguard one year I had a fee a lifeguard who walked alongside me and
a lifeguard who walked alongside me and
a lifeguard who walked alongside me and kept pace with me and the next year I
kept pace with me and the next year I
kept pace with me and the next year I had a male lifeguard who swam actually
had a male lifeguard who swam actually
had a male lifeguard who swam actually right next to me and asked me how I was
right next to me and asked me how I was
right next to me and asked me how I was doing which is nice the first like five
doing which is nice the first like five
doing which is nice the first like five hundred times you asked it I really
hundred times you asked it I really
hundred times you asked it I really appreciate it the five hundred first
appreciate it the five hundred first
appreciate it the five hundred first time got real annoying and I couldn’t do
time got real annoying and I couldn’t do
time got real annoying and I couldn’t do all the Football Union at all so it’s no
all the Football Union at all so it’s no
all the Football Union at all so it’s no surprise that sometimes I felt isolated
surprise that sometimes I felt isolated
surprise that sometimes I felt isolated I felt lonely I felt like my body wasn’t
I felt lonely I felt like my body wasn’t
I felt lonely I felt like my body wasn’t a body I felt like my body was in prison
a body I felt like my body was in prison
a body I felt like my body was in prison but you don’t have to take my word for
but you don’t have to take my word for
but you don’t have to take my word for it
it
it studies bear this out a 2016 study shows
studies bear this out a 2016 study shows
studies bear this out a 2016 study shows people with disabilities do tend to have
people with disabilities do tend to have
people with disabilities do tend to have more life stressors we are more
more life stressors we are more
more life stressors we are more susceptible to anxiety and depression we
susceptible to anxiety and depression we
susceptible to anxiety and depression we do tend to feel more isolated sometimes
do tend to feel more isolated sometimes
do tend to feel more isolated sometimes socially maybe geographically we have
socially maybe geographically we have
socially maybe geographically we have higher living costs probably because we
higher living costs probably because we
higher living costs probably because we generally have higher medical costs and
generally have higher medical costs and
generally have higher medical costs and that’s all rolled into living we don’t
that’s all rolled into living we don’t
that’s all rolled into living we don’t always have the good social structures
always have the good social structures
always have the good social structures that allow us to achieve financial
that allow us to achieve financial
that allow us to achieve financial independence that let us get the job or
independence that let us get the job or
independence that let us get the job or the diploma it’s not that great but it’s
the diploma it’s not that great but it’s
the diploma it’s not that great but it’s not all terrible either so I stand
not all terrible either so I stand
not all terrible either so I stand before you today and I just disclose
before you today and I just disclose
before you today and I just disclose that I would disabled individual but
that I would disabled individual but
that I would disabled individual but it’s possible that if you saw me on the
it’s possible that if you saw me on the
it’s possible that if you saw me on the street you wouldn’t know this and I get
street you wouldn’t know this and I get
street you wouldn’t know this and I get it like when I tell you to think of
it like when I tell you to think of
it like when I tell you to think of someone who has a disability you might
someone who has a disability you might
someone who has a disability you might not think of me but I tell you also that
not think of me but I tell you also that
not think of me but I tell you also that I’m an independent man you know I have
I’m an independent man you know I have
I’m an independent man you know I have my own apartment I have a full-time job
my own apartment I have a full-time job
my own apartment I have a full-time job I pay my own bills I maintain my
I pay my own bills I maintain my
I pay my own bills I maintain my relationships with my family and my
relationships with my family and my
relationships with my family and my friends with my girlfriend – with whom I
friends with my girlfriend – with whom I
friends with my girlfriend – with whom I live and who is the brightest star my
live and who is the brightest star my
live and who is the brightest star my Scott I even take care of my two cats or
Scott I even take care of my two cats or
Scott I even take care of my two cats or they take care of me
they take care of me
they take care of me [Laughter]
[Laughter]
[Laughter] and at this point you might say what
and at this point you might say what
and at this point you might say what will hold up neato you can’t be both
will hold up neato you can’t be both
will hold up neato you can’t be both disabled and independent that’s like
disabled and independent that’s like
disabled and independent that’s like saying that you have a pet hippo who is
saying that you have a pet hippo who is
saying that you have a pet hippo who is also a pet parrot a cute animal to be
also a pet parrot a cute animal to be
also a pet parrot a cute animal to be sure but purely hypothetical at this
sure but purely hypothetical at this
sure but purely hypothetical at this point and I tell you that this hippo
point and I tell you that this hippo
point and I tell you that this hippo parrot paradox is a fake paradox just
parrot paradox is a fake paradox just
parrot paradox is a fake paradox just because I’m disabled
because I’m disabled
because I’m disabled doesn’t mean I’m not independent and
doesn’t mean I’m not independent and
doesn’t mean I’m not independent and even if I get you all to that point and
even if I get you all to that point and
even if I get you all to that point and you say okay that’s cool well I don’t
you say okay that’s cool well I don’t
you say okay that’s cool well I don’t really see you as disabled I see you as
really see you as disabled I see you as
really see you as disabled I see you as enabled I appreciate that but that’s
enabled I appreciate that but that’s
enabled I appreciate that but that’s also on the wrong track right just
also on the wrong track right just
also on the wrong track right just because I’m an independent man does not
because I’m an independent man does not
because I’m an independent man does not also mean that I’m not a disabled man my
also mean that I’m not a disabled man my
also mean that I’m not a disabled man my message here is that we do not need to
message here is that we do not need to
message here is that we do not need to be defined by what we lack we are so
be defined by what we lack we are so
be defined by what we lack we are so much more than our genes faulty or not
much more than our genes faulty or not
much more than our genes faulty or not we can be defined by our ability and
we can be defined by our ability and
we can be defined by our ability and what we bring to the table even if what
what we bring to the table even if what
what we bring to the table even if what we bring to the table is just our own
we bring to the table is just our own
we bring to the table is just our own opinions our own lived experiences and
opinions our own lived experiences and
opinions our own lived experiences and and what have you so how do we get from
and what have you so how do we get from
and what have you so how do we get from little Nico who was real cute but
little Nico who was real cute but
little Nico who was real cute but sometimes felt lonely sometimes felt
sometimes felt lonely sometimes felt
sometimes felt lonely sometimes felt powerless to the incredibly handsome man
powerless to the incredibly handsome man
powerless to the incredibly handsome man you see before you today
you see before you today
you see before you today well one real big benefit that I had in
well one real big benefit that I had in
well one real big benefit that I had in my life are support groups a 2017
my life are support groups a 2017
my life are support groups a 2017 studies showed that participation in
studies showed that participation in
studies showed that participation in rare disease support groups gave members
rare disease support groups gave members
rare disease support groups gave members better emotional health less instances
better emotional health less instances
better emotional health less instances of anxiety and depression less instances
of anxiety and depression less instances
of anxiety and depression less instances of social isolation it gave members
of social isolation it gave members
of social isolation it gave members better coping skills you get hit with a
better coping skills you get hit with a
better coping skills you get hit with a higher hospitalization bill you get hit
higher hospitalization bill you get hit
higher hospitalization bill you get hit with a sick kid you get hit with
with a sick kid you get hit with
with a sick kid you get hit with bullying in school and I have to say
bullying in school and I have to say
bullying in school and I have to say that I didn’t experience much bullying
that I didn’t experience much bullying
that I didn’t experience much bullying but there were some instances we with
but there were some instances we with
but there were some instances we with CCHS do benefit from our own support
CCHS do benefit from our own support
CCHS do benefit from our own support group which is
group which is
group which is called the CCHS family network and on
called the CCHS family network and on
called the CCHS family network and on whose board I said the CCHS family
whose board I said the CCHS family
whose board I said the CCHS family network was begun maybe a year after my
network was begun maybe a year after my
network was begun maybe a year after my birth begun by a woman I’m honored to
birth begun by a woman I’m honored to
birth begun by a woman I’m honored to call mom and we began not even
call mom and we began not even
call mom and we began not even nationally almost kind of like
nationally almost kind of like
nationally almost kind of like regionally real hit or miss you know you
regionally real hit or miss you know you
regionally real hit or miss you know you might live in South Dakota and not have
might live in South Dakota and not have
might live in South Dakota and not have any other CCHS families for for miles
any other CCHS families for for miles
any other CCHS families for for miles around or you might live in New York
around or you might live in New York
around or you might live in New York City and have someone who goes to the
City and have someone who goes to the
City and have someone who goes to the same doctor as you do strangers became
same doctor as you do strangers became
same doctor as you do strangers became friends as we moved from being regional
friends as we moved from being regional
friends as we moved from being regional and not so connected to national and
and not so connected to national and
and not so connected to national and more connected and then removed
more connected and then removed
more connected and then removed internationally and became somehow even
internationally and became somehow even
internationally and became somehow even more connected strangers became friends
more connected strangers became friends
more connected strangers became friends and friends became family this is a
and friends became family this is a
and friends became family this is a photo from one of our first ever
photo from one of our first ever
photo from one of our first ever conferences although I think the youth
conferences although I think the youth
conferences although I think the youth today called them meetups
today called them meetups
today called them meetups the early 90s in Michigan somewhere I’m
the early 90s in Michigan somewhere I’m
the early 90s in Michigan somewhere I’m still friends with some of these
still friends with some of these
still friends with some of these individuals today imagine you’re running
individuals today imagine you’re running
individuals today imagine you’re running an obstacle course and you run it every
an obstacle course and you run it every
an obstacle course and you run it every day of your life
day of your life
day of your life and you think and you feel that you’re
and you think and you feel that you’re
and you think and you feel that you’re the only person running this obstacle
the only person running this obstacle
the only person running this obstacle course but then you find out that there
course but then you find out that there
course but then you find out that there are men and women running the obstacle
are men and women running the obstacle
are men and women running the obstacle course alongside you and then you find
course alongside you and then you find
course alongside you and then you find out that there are men and women running
out that there are men and women running
out that there are men and women running that obstacle course after you and
that obstacle course after you and
that obstacle course after you and before you giving me giving us a space
before you giving me giving us a space
before you giving me giving us a space where we can hear and be heard is
where we can hear and be heard is
where we can hear and be heard is invaluable and I noticed something
invaluable and I noticed something
invaluable and I noticed something within myself also with each successive
within myself also with each successive
within myself also with each successive conference with each successive Meetup
conference with each successive Meetup
conference with each successive Meetup I got the chance to help other people
I got the chance to help other people
I got the chance to help other people with CCHS through their own troubles and
with CCHS through their own troubles and
with CCHS through their own troubles and their own tribulations I got to advise
their own tribulations I got to advise
their own tribulations I got to advise them I got to help them and this is one
them I got to help them and this is one
them I got to help them and this is one of the biggest honors
of the biggest honors
of the biggest honors in my life when I am able to help people
in my life when I am able to help people
in my life when I am able to help people activity that I took both first inside
activity that I took both first inside
activity that I took both first inside the CCHS family network and then without
the CCHS family network and then without
the CCHS family network and then without running a soup kitchen doing a canned
running a soup kitchen doing a canned
running a soup kitchen doing a canned food drive whatever I felt smart and I
food drive whatever I felt smart and I
food drive whatever I felt smart and I felt useful and I felt proud and I felt
felt useful and I felt proud and I felt
felt useful and I felt proud and I felt valued but I had never really felt these
valued but I had never really felt these
valued but I had never really felt these sensations so strongly before so I
sensations so strongly before so I
sensations so strongly before so I thought I was ill check my temperature
thought I was ill check my temperature
thought I was ill check my temperature and I checked my heart rate okay I
and I checked my heart rate okay I
and I checked my heart rate okay I thought I had some kind of infection but
thought I had some kind of infection but
thought I had some kind of infection but what I had to realize that it’s not the
what I had to realize that it’s not the
what I had to realize that it’s not the flu its fulfillment growing up as I did
flu its fulfillment growing up as I did
flu its fulfillment growing up as I did with this support group has benefited me
with this support group has benefited me
with this support group has benefited me in numerous ways not only did I go to
in numerous ways not only did I go to
in numerous ways not only did I go to high school and I went to college I also
high school and I went to college I also
high school and I went to college I also went to graduate school which I’m a
went to graduate school which I’m a
went to graduate school which I’m a little more proud of because you know
little more proud of because you know
little more proud of because you know college was always expected of me that
college was always expected of me that
college was always expected of me that was part of the plan all along and grad
was part of the plan all along and grad
was part of the plan all along and grad school was not in fact after graduate
school was not in fact after graduate
school was not in fact after graduate school I felt comfortable enough
school I felt comfortable enough
school I felt comfortable enough accepting a opportunity in San Francisco
accepting a opportunity in San Francisco
accepting a opportunity in San Francisco so I went from Binghamton New York where
so I went from Binghamton New York where
so I went from Binghamton New York where I earned my degree where I had lived for
I earned my degree where I had lived for
I earned my degree where I had lived for a few years in a place that I grew up
a few years in a place that I grew up
a few years in a place that I grew up visiting because I’m from owning on to
visiting because I’m from owning on to
visiting because I’m from owning on to New York so Binghamton is like a day
New York so Binghamton is like a day
New York so Binghamton is like a day trip to go shopping to a city that I had
trip to go shopping to a city that I had
trip to go shopping to a city that I had never been in before where I knew nobody
never been in before where I knew nobody
never been in before where I knew nobody that I had only seen in books and TV I
that I had only seen in books and TV I
that I had only seen in books and TV I knew that full house was filmed in San
knew that full house was filmed in San
knew that full house was filmed in San Francisco never met Bob Saget
Francisco never met Bob Saget
Francisco never met Bob Saget unfortunately and when I now have an
unfortunately and when I now have an
unfortunately and when I now have an opportunity that I consider I ask myself
opportunity that I consider I ask myself
opportunity that I consider I ask myself three questions one is it safe well yes
three questions one is it safe well yes
three questions one is it safe well yes San Francisco was safe there are CCHS
San Francisco was safe there are CCHS
San Francisco was safe there are CCHS families in the Bay Area and medical
families in the Bay Area and medical
families in the Bay Area and medical professionals so if anything bad
professionals so if anything bad
professionals so if anything bad happened I had some kind of support
happened I had some kind of support
happened I had some kind of support network there is it feasible well again
network there is it feasible well again
network there is it feasible well again yes if I worked very hard if I stretched
yes if I worked very hard if I stretched
yes if I worked very hard if I stretched my
my
my and was frugal and if I was lucky I
and was frugal and if I was lucky I
and was frugal and if I was lucky I could afford to live there and is it fun
could afford to live there and is it fun
could afford to live there and is it fun yes absolutely
yes absolutely
yes absolutely I had fully enjoyed my entire year there
I had fully enjoyed my entire year there
I had fully enjoyed my entire year there and I kind of felt like Frodo Baggins
and I kind of felt like Frodo Baggins
and I kind of felt like Frodo Baggins from the Shire
from the Shire
from the Shire Gandalf knocks on your door and says hey
Gandalf knocks on your door and says hey
Gandalf knocks on your door and says hey Frodo real real quick take this ring
Frodo real real quick take this ring
Frodo real real quick take this ring drop it in Mountain Doom and then come
drop it in Mountain Doom and then come
drop it in Mountain Doom and then come back home he’s right
San Francisco is much better than no
San Francisco is much better than no dude so after I got done in San
dude so after I got done in San
dude so after I got done in San Francisco and again I spent a year there
Francisco and again I spent a year there
Francisco and again I spent a year there I moved back to New York and then a few
I moved back to New York and then a few
I moved back to New York and then a few months later I accepted a position in
months later I accepted a position in
months later I accepted a position in Texas that lasted a year and then I
Texas that lasted a year and then I
Texas that lasted a year and then I moved back to New York and then I got a
moved back to New York and then I got a
moved back to New York and then I got a full-time job here in Albany I’m a civil
full-time job here in Albany I’m a civil
full-time job here in Albany I’m a civil servant and that may be a public service
servant and that may be a public service
servant and that may be a public service or a public disservice depending upon
or a public disservice depending upon
or a public disservice depending upon your opinion of civil servants and
your opinion of civil servants and
your opinion of civil servants and government workers and all through my
government workers and all through my
government workers and all through my travels I stayed connected with people
travels I stayed connected with people
travels I stayed connected with people with CCHS through Facebook being able to
with CCHS through Facebook being able to
with CCHS through Facebook being able to help other people with CCHS is one of
help other people with CCHS is one of
help other people with CCHS is one of the biggest honors of my life like I
the biggest honors of my life like I
the biggest honors of my life like I said I’ve begun to realize that it is
said I’ve begun to realize that it is
said I’ve begun to realize that it is not enough that I succeed others must
not enough that I succeed others must
not enough that I succeed others must also succeed you don’t get very far
also succeed you don’t get very far
also succeed you don’t get very far being a flash in the pan I should not be
being a flash in the pan I should not be
being a flash in the pan I should not be the exception to the rule
the exception to the rule
the exception to the rule I should just be part of a standard at
I should just be part of a standard at
I should just be part of a standard at the intersection of self and other you
the intersection of self and other you
the intersection of self and other you have empathy I stand before you today to
have empathy I stand before you today to
have empathy I stand before you today to tell you that it took me 20 years to
tell you that it took me 20 years to
tell you that it took me 20 years to live in a body that I like that I
live in a body that I like that I
live in a body that I like that I sometimes admire
sometimes admire
sometimes admire and it took me 24 years to develop a
and it took me 24 years to develop a
and it took me 24 years to develop a personality that I liked and sometimes
personality that I liked and sometimes
personality that I liked and sometimes admire and if I can do anything to help
admire and if I can do anything to help
admire and if I can do anything to help young people with disabilities reach
young people with disabilities reach
young people with disabilities reach that same like stage of acceptance
that same like stage of acceptance
that same like stage of acceptance earlier than I did something I
earlier than I did something I
earlier than I did something I absolutely want to do I have a friend
absolutely want to do I have a friend
absolutely want to do I have a friend who has CC HS and she wants to pursue
who has CC HS and she wants to pursue
who has CC HS and she wants to pursue her PhD she lives in Canada and she
her PhD she lives in Canada and she
her PhD she lives in Canada and she wants to examine the psychosocial
wants to examine the psychosocial
wants to examine the psychosocial effects of being a sick kid what happens
effects of being a sick kid what happens
effects of being a sick kid what happens to you in your development and your
to you in your development and your
to you in your development and your personality if you’re frequently
personality if you’re frequently
personality if you’re frequently hospitalized what happens to you if you
hospitalized what happens to you if you
hospitalized what happens to you if you can’t do the swimming unit if you can’t
can’t do the swimming unit if you can’t
can’t do the swimming unit if you can’t go out for recess because it’s too cold
go out for recess because it’s too cold
go out for recess because it’s too cold or too hot I have another friend who
or too hot I have another friend who
or too hot I have another friend who lives in Massachusetts this time who
lives in Massachusetts this time who
lives in Massachusetts this time who went to pharmacy tech school because
went to pharmacy tech school because
went to pharmacy tech school because after all when he was young and he
after all when he was young and he
after all when he was young and he needed prescription medication he got
needed prescription medication he got
needed prescription medication he got those medicines and those drugs very
those medicines and those drugs very
those medicines and those drugs very quickly and easily and he wants to
quickly and easily and he wants to
quickly and easily and he wants to ensure those say that that same ease of
ensure those say that that same ease of
ensure those say that that same ease of access forgive me for everybody else
access forgive me for everybody else
access forgive me for everybody else that comes after him and I have another
that comes after him and I have another
that comes after him and I have another friend who wants to be a teacher and
friend who wants to be a teacher and
friend who wants to be a teacher and she’s going to school and learning how
she’s going to school and learning how
she’s going to school and learning how she could make her classroom accessible
she could make her classroom accessible
she could make her classroom accessible to everyone these days like I said our
to everyone these days like I said our
to everyone these days like I said our reach is international not only do we
reach is international not only do we
reach is international not only do we have CCHS support groups in the US but
have CCHS support groups in the US but
have CCHS support groups in the US but also the UK we have some families in
also the UK we have some families in
also the UK we have some families in Germany and also in France CCHS families
Germany and also in France CCHS families
Germany and also in France CCHS families in Japan are very well connected to each
in Japan are very well connected to each
in Japan are very well connected to each other so often rare disease support
other so often rare disease support
other so often rare disease support groups are at the forefront of
groups are at the forefront of
groups are at the forefront of advocating for themselves advocating for
advocating for themselves advocating for
advocating for themselves advocating for more research advocating from our
more research advocating from our
more research advocating from our funding for research advocating for drug
funding for research advocating for drug
funding for research advocating for drug treatment for cures we exchange our own
treatment for cures we exchange our own
treatment for cures we exchange our own research our own advice and while we do
research our own advice and while we do
research our own advice and while we do not share a common location
not share a common location
not share a common location maybe not even a common language we do
maybe not even a common language we do
maybe not even a common language we do share experiences we do share feelings
share experiences we do share feelings
share experiences we do share feelings and perspectives this is why I like to
and perspectives this is why I like to
and perspectives this is why I like to say nothing about us without us because
say nothing about us without us because
say nothing about us without us because I’ve given you some examples of how my
I’ve given you some examples of how my
I’ve given you some examples of how my CCHS peers people I’m honored to call my
CCHS peers people I’m honored to call my
CCHS peers people I’m honored to call my friends have developed these skills like
friends have developed these skills like
friends have developed these skills like I have and are now leading support
I have and are now leading support
I have and are now leading support groups on their own and offering advice
groups on their own and offering advice
groups on their own and offering advice to younger families in this way rare
to younger families in this way rare
to younger families in this way rare disease support groups are acting as
disease support groups are acting as
disease support groups are acting as their own incubators they’ve they’ve
their own incubators they’ve they’ve
their own incubators they’ve they’ve helped give rise to the next generation
helped give rise to the next generation
helped give rise to the next generation of leaders so truly nothing about us
of leaders so truly nothing about us
of leaders so truly nothing about us without us and I also like to say that
without us and I also like to say that
without us and I also like to say that while our reach is global our community
while our reach is global our community
while our reach is global our community is local so a few nights ago at 3 a.m.
is local so a few nights ago at 3 a.m.
is local so a few nights ago at 3 a.m. when I like most sane people was asleep
when I like most sane people was asleep
when I like most sane people was asleep I got a text message on whatsapp from a
I got a text message on whatsapp from a
I got a text message on whatsapp from a friend of mine in Italy and when I woke
friend of mine in Italy and when I woke
friend of mine in Italy and when I woke up and I saw this message I was pissed
up and I saw this message I was pissed
up and I saw this message I was pissed just want to get some sleep man
just want to get some sleep man
just want to get some sleep man but then I reconsidered for two reasons
but then I reconsidered for two reasons
but then I reconsidered for two reasons one the question she had to ask me or
one the question she had to ask me or
one the question she had to ask me or the information she wanted to share was
the information she wanted to share was
the information she wanted to share was probably really important and two when
probably really important and two when
probably really important and two when it’s 3 a.m. here it’s 9 a.m. in Italy so
it’s 3 a.m. here it’s 9 a.m. in Italy so
it’s 3 a.m. here it’s 9 a.m. in Italy so I should really be more understanding as
I should really be more understanding as
I should really be more understanding as I close my talk today and I want to hit
I close my talk today and I want to hit
I close my talk today and I want to hit you with more numbers like I mentioned
you with more numbers like I mentioned
you with more numbers like I mentioned roughly 1,200 people worldwide with CCHS
roughly 1,200 people worldwide with CCHS
roughly 1,200 people worldwide with CCHS that’s not really much at all you can’t
that’s not really much at all you can’t
that’s not really much at all you can’t fill this stadium with 1200 people you
fill this stadium with 1200 people you
fill this stadium with 1200 people you might be able to fill a village but they
might be able to fill a village but they
might be able to fill a village but they even that would be sparsely populated
even that would be sparsely populated
even that would be sparsely populated much less a town or a city but our
much less a town or a city but our
much less a town or a city but our circle gets wider when we see that the
circle gets wider when we see that the
circle gets wider when we see that the organization global genes estimates that
organization global genes estimates that
organization global genes estimates that 30 million Americans live with a rare
30 million Americans live with a rare
30 million Americans live with a rare disorder
disorder
disorder and our circle gets wider still when we
and our circle gets wider still when we
and our circle gets wider still when we consider that a few years ago the CDC
consider that a few years ago the CDC
consider that a few years ago the CDC told us that one in five Americans has
told us that one in five Americans has
told us that one in five Americans has or will encounter a disability in their
or will encounter a disability in their
or will encounter a disability in their lifetimes asthma diabetes mobility
lifetimes asthma diabetes mobility
lifetimes asthma diabetes mobility impairments or hearing impairments
impairments or hearing impairments
impairments or hearing impairments developmental disorders neurological
developmental disorders neurological
developmental disorders neurological disorders like mine everything
disorders like mine everything
disorders like mine everything one in five Americans is 20%
one in five Americans is 20%
one in five Americans is 20% one in five Americans is me and one in
one in five Americans is me and one in
one in five Americans is me and one in five Americans maybe some of you as well
five Americans maybe some of you as well
five Americans maybe some of you as well so as you leave here today and you go
so as you leave here today and you go
so as you leave here today and you go home I urge you to go forward with
home I urge you to go forward with
home I urge you to go forward with compassion and empathy and when someone
compassion and empathy and when someone
compassion and empathy and when someone asks you hey what did that weird blond
asks you hey what did that weird blond
asks you hey what did that weird blond kid talk about you can sum up my talk by
kid talk about you can sum up my talk by
kid talk about you can sum up my talk by reminding them we’re all a little
reminding them we’re all a little
reminding them we’re all a little screwed up thank you
screwed up thank you
screwed up thank you [Music]
[Music]
[Music] [Applause]
[Applause]
[Applause] you
”
Be First to Comment