hello so coming up here to speak about confidence when you’re still only a
confidence when you’re still only a
confidence when you’re still only a teenager seems a little bit ambitious
teenager seems a little bit ambitious
teenager seems a little bit ambitious and to tell you the truth all my
and to tell you the truth all my
and to tell you the truth all my confidence right now is kind of 3,000
confidence right now is kind of 3,000
confidence right now is kind of 3,000 miles away back in New York City but
miles away back in New York City but
miles away back in New York City but here I am on a stage in London in this
here I am on a stage in London in this
here I am on a stage in London in this red circle and I’m going to have to
red circle and I’m going to have to
red circle and I’m going to have to coach as much of that confidence back
coach as much of that confidence back
coach as much of that confidence back across the pond any confidence that I
across the pond any confidence that I
across the pond any confidence that I have today has come from three things
have today has come from three things
have today has come from three things finding supporting individuals embracing
finding supporting individuals embracing
finding supporting individuals embracing the word know and knowing that the cost
the word know and knowing that the cost
the word know and knowing that the cost of doing nothing is too great so the
of doing nothing is too great so the
of doing nothing is too great so the first time I was supposed to do
first time I was supposed to do
first time I was supposed to do something more happened when I was
something more happened when I was
something more happened when I was around 8 years old and I was sitting in
around 8 years old and I was sitting in
around 8 years old and I was sitting in class dreading having to read out loud
class dreading having to read out loud
class dreading having to read out loud later but for the time my teacher was
later but for the time my teacher was
later but for the time my teacher was just passing out our tests and it was
just passing out our tests and it was
just passing out our tests and it was science and I love science so I wasn’t
science and I love science so I wasn’t
science and I love science so I wasn’t nervous but then I didn’t get my paper
nervous but then I didn’t get my paper
nervous but then I didn’t get my paper back and I don’t know how it is here but
back and I don’t know how it is here but
back and I don’t know how it is here but in America that is never a good sign so
in America that is never a good sign so
in America that is never a good sign so me and a few other kids were told to
me and a few other kids were told to
me and a few other kids were told to stay after class so after class I stood
stay after class so after class I stood
stay after class so after class I stood at my teacher miss Jane’s desk and she
at my teacher miss Jane’s desk and she
at my teacher miss Jane’s desk and she held up a piece of paper and she said I
held up a piece of paper and she said I
held up a piece of paper and she said I don’t know who this is
don’t know who this is
don’t know who this is and of course at the top of it read
and of course at the top of it read
and of course at the top of it read dreamily one of my best friends Damien
dreamily one of my best friends Damien
dreamily one of my best friends Damien quickly replied oh that’s just Emily you
quickly replied oh that’s just Emily you
quickly replied oh that’s just Emily you see sometimes she’s Emily in some time
see sometimes she’s Emily in some time
see sometimes she’s Emily in some time she’s dreamily I think it’s so cool and
she’s dreamily I think it’s so cool and
she’s dreamily I think it’s so cool and I was trying not to laugh and to tell
I was trying not to laugh and to tell
I was trying not to laugh and to tell you the cheers I think my teacher was
you the cheers I think my teacher was
you the cheers I think my teacher was too but then she turned to me looked me
too but then she turned to me looked me
too but then she turned to me looked me in the eye and said very seriously Emily
in the eye and said very seriously Emily
in the eye and said very seriously Emily this is your name dyslexia cannot be an
this is your name dyslexia cannot be an
this is your name dyslexia cannot be an excuse you can do more than this so I
excuse you can do more than this so I
excuse you can do more than this so I thought wonderful at this point I knew I
thought wonderful at this point I knew I
thought wonderful at this point I knew I had to work on reading out loud and not
had to work on reading out loud and not
had to work on reading out loud and not only that I had to obviously work on my
only that I had to obviously work on my
only that I had to obviously work on my writing as well but if I was going to do
writing as well but if I was going to do
writing as well but if I was going to do what I was going to make it as fun as
what I was going to make it as fun as
what I was going to make it as fun as possible for myself so with graph paper
possible for myself so with graph paper
possible for myself so with graph paper colored pens and Harry Potter I got to
colored pens and Harry Potter I got to
colored pens and Harry Potter I got to work the vertical lines in the graph
work the vertical lines in the graph
work the vertical lines in the graph paper helped to study my eye and the
paper helped to study my eye and the
paper helped to study my eye and the switching colored pens helped my writing
switching colored pens helped my writing
switching colored pens helped my writing and also made my notebook very artistic
and also made my notebook very artistic
and also made my notebook very artistic and I credit Harry Potter for helping me
and I credit Harry Potter for helping me
and I credit Harry Potter for helping me to speak out loud because every single
to speak out loud because every single
to speak out loud because every single night without fail
night without fail
night without fail my mother and I would go back and forth
my mother and I would go back and forth
my mother and I would go back and forth reading a chapter out loud and while she
reading a chapter out loud and while she
reading a chapter out loud and while she quit when she saw the size of the fifth
quit when she saw the size of the fifth
quit when she saw the size of the fifth book and my voice was completely
book and my voice was completely
book and my voice was completely strained by the end of the month at the
strained by the end of the month at the
strained by the end of the month at the end I was more confident about reading
end I was more confident about reading
end I was more confident about reading in class and I went from fearing it to
in class and I went from fearing it to
in class and I went from fearing it to volunteering to do so miss J my teacher
volunteering to do so miss J my teacher
volunteering to do so miss J my teacher shouldn’t have to say something but
shouldn’t have to say something but
shouldn’t have to say something but because she knew I was capable of more
because she knew I was capable of more
because she knew I was capable of more and because she pushed me to work harder
and because she pushed me to work harder
and because she pushed me to work harder I overcame my former dyslexia and I
I overcame my former dyslexia and I
I overcame my former dyslexia and I overcame my challenges and began to love
overcame my challenges and began to love
overcame my challenges and began to love to read and I read read anything to get
to read and I read read anything to get
to read and I read read anything to get my hands on I read books newspaper
my hands on I read books newspaper
my hands on I read books newspaper articles magazines and even blogs online
articles magazines and even blogs online
articles magazines and even blogs online and these blogs introduced me to
and these blogs introduced me to
and these blogs introduced me to interesting people all around the world
interesting people all around the world
interesting people all around the world who are doing amazing things but then
who are doing amazing things but then
who are doing amazing things but then one day when I was 13 I stumbled on a
one day when I was 13 I stumbled on a
one day when I was 13 I stumbled on a very particular blog about a young
very particular blog about a young
very particular blog about a young mother and her son Tripp Roth who was
mother and her son Tripp Roth who was
mother and her son Tripp Roth who was born with an extremely severe case of EB
born with an extremely severe case of EB
born with an extremely severe case of EB now EB or epidermolysis bullosa is a
now EB or epidermolysis bullosa is a
now EB or epidermolysis bullosa is a rare genetic connective tissue disorder
rare genetic connective tissue disorder
rare genetic connective tissue disorder that due to a lack of a vital protein
that due to a lack of a vital protein
that due to a lack of a vital protein that acts like velcro that keep your
that acts like velcro that keep your
that acts like velcro that keep your skin together the top layer of Tripp
skin together the top layer of Tripp
skin together the top layer of Tripp skin easily disconnected from the bottom
skin easily disconnected from the bottom
skin easily disconnected from the bottom layer of her skin which left wounds all
layer of her skin which left wounds all
layer of her skin which left wounds all over his body
over his body
over his body this meant that even putting on clothes
this meant that even putting on clothes
this meant that even putting on clothes or even getting a hug would cause his
or even getting a hug would cause his
or even getting a hug would cause his skin to rip or tear EB even creates
skin to rip or tear EB even creates
skin to rip or tear EB even creates wounds on the inside so Tripp even need
wounds on the inside so Tripp even need
wounds on the inside so Tripp even need a trach to breathe what Tripp went
a trach to breathe what Tripp went
a trach to breathe what Tripp went through every single day was
through every single day was
through every single day was unimaginable then he still laughed
unimaginable then he still laughed
unimaginable then he still laughed smiled and played his little drum set
smiled and played his little drum set
smiled and played his little drum set and as his mom would sing
and as his mom would sing
and as his mom would sing Tripp spiriting to soar off the screen
Tripp spiriting to soar off the screen
Tripp spiriting to soar off the screen with his big cheeks wide smile and
with his big cheeks wide smile and
with his big cheeks wide smile and bright beautiful eyes he battled so hard
bright beautiful eyes he battled so hard
bright beautiful eyes he battled so hard and so did his mother Tripp inspired me
and so did his mother Tripp inspired me
and so did his mother Tripp inspired me and although I never spoke to him and we
and although I never spoke to him and we
and although I never spoke to him and we never met his powerful courage reached
never met his powerful courage reached
never met his powerful courage reached into my heart and made me want to do
into my heart and made me want to do
into my heart and made me want to do something anything at this point to find
something anything at this point to find
something anything at this point to find a cure for EB but then one night sitting
a cure for EB but then one night sitting
a cure for EB but then one night sitting in my room only 13 Courtney had posted
in my room only 13 Courtney had posted
in my room only 13 Courtney had posted that Tripp had passed away
that Tripp had passed away
that Tripp had passed away EB I
EB I
EB I too much for a small body and he would
too much for a small body and he would
too much for a small body and he would never get to see his third birthday
never get to see his third birthday
never get to see his third birthday something sparked in me that night and I
something sparked in me that night and I
something sparked in me that night and I made a decision I couldn’t help trip
made a decision I couldn’t help trip
made a decision I couldn’t help trip because it was too late why couldn’t the
because it was too late why couldn’t the
because it was too late why couldn’t the doctors do more so I decided if I
doctors do more so I decided if I
doctors do more so I decided if I couldn’t help trip I was going to help
couldn’t help trip I was going to help
couldn’t help trip I was going to help other children with UB no matter what it
other children with UB no matter what it
other children with UB no matter what it took
took
took now I didn’t know how to help but I knew
now I didn’t know how to help but I knew
now I didn’t know how to help but I knew where to start
where to start
where to start Deborah a Courtney his mother had
Deborah a Courtney his mother had
Deborah a Courtney his mother had thanked Deborah of America many times in
thanked Deborah of America many times in
thanked Deborah of America many times in her blog for helping her in trip Deborah
her blog for helping her in trip Deborah
her blog for helping her in trip Deborah of America is a nonprofit organization
of America is a nonprofit organization
of America is a nonprofit organization that provides information supplies and
that provides information supplies and
that provides information supplies and bandages that insurance does not pay for
bandages that insurance does not pay for
bandages that insurance does not pay for in America to families with children
in America to families with children
in America to families with children suffering with TB now I decided to track
suffering with TB now I decided to track
suffering with TB now I decided to track down the executive director Brett
down the executive director Brett
down the executive director Brett Copelan at Deborah’s annual gala benefit
Copelan at Deborah’s annual gala benefit
Copelan at Deborah’s annual gala benefit in New York City I had sent him an email
in New York City I had sent him an email
in New York City I had sent him an email prior to this but I felt if he could
prior to this but I felt if he could
prior to this but I felt if he could just meet me that maybe he would give me
just meet me that maybe he would give me
just meet me that maybe he would give me a chance and he did just that Brett gave
a chance and he did just that Brett gave
a chance and he did just that Brett gave a teenager an opportunity to help slowly
a teenager an opportunity to help slowly
a teenager an opportunity to help slowly but surely he began to teach me about EB
but surely he began to teach me about EB
but surely he began to teach me about EB and the daily struggles that children
and the daily struggles that children
and the daily struggles that children with TB face one of them included that
with TB face one of them included that
with TB face one of them included that every single day children with TB are
every single day children with TB are
every single day children with TB are bathed in a very diluted bleach solution
bathed in a very diluted bleach solution
bathed in a very diluted bleach solution to prevent their wounds from getting
to prevent their wounds from getting
to prevent their wounds from getting infections but bleach is toxic and can
infections but bleach is toxic and can
infections but bleach is toxic and can be very harsh on skin and not a lot of
be very harsh on skin and not a lot of
be very harsh on skin and not a lot of information what a lot not a lot of
information what a lot not a lot of
information what a lot not a lot of other experiments have been conducted on
other experiments have been conducted on
other experiments have been conducted on other possible solutions that could be
other possible solutions that could be
other possible solutions that could be better for and less harmful on these
better for and less harmful on these
better for and less harmful on these children skin because these are children
children skin because these are children
children skin because these are children so I decided to look into alternative
so I decided to look into alternative
so I decided to look into alternative solutions and one of them that Brett had
solutions and one of them that Brett had
solutions and one of them that Brett had mentioned included Nick salt water now
mentioned included Nick salt water now
mentioned included Nick salt water now bleach is a very harsh chemical called
bleach is a very harsh chemical called
bleach is a very harsh chemical called hypochlorite acid Nick salt water is a
hypochlorite acid Nick salt water is a
hypochlorite acid Nick salt water is a solution that consists of hypochlorous
solution that consists of hypochlorous
solution that consists of hypochlorous acid I know the endings are very similar
acid I know the endings are very similar
acid I know the endings are very similar but hypochlorous acid is a very as a
but hypochlorous acid is a very as a
but hypochlorous acid is a very as a naturally produced chemical that our
naturally produced chemical that our
naturally produced chemical that our immune system produces – how
immune system produces – how
immune system produces – how us fight bacteria so I thought what
us fight bacteria so I thought what
us fight bacteria so I thought what wouldn’t unnaturally produced chemical
wouldn’t unnaturally produced chemical
wouldn’t unnaturally produced chemical be better than such a harsh chemical
be better than such a harsh chemical
be better than such a harsh chemical like bleach so I got to work I went home
like bleach so I got to work I went home
like bleach so I got to work I went home when I researched different
when I researched different
when I researched different antibacterial solutions along with
antibacterial solutions along with
antibacterial solutions along with different skin bacterias and then
different skin bacterias and then
different skin bacterias and then conduct made an experiment that would
conduct made an experiment that would
conduct made an experiment that would test different and varying
test different and varying
test different and varying concentrations of each solution on its
concentrations of each solution on its
concentrations of each solution on its effectiveness at killing bacteria all I
effectiveness at killing bacteria all I
effectiveness at killing bacteria all I need at this point was for my middle
need at this point was for my middle
need at this point was for my middle school to ok the project and it didn’t
school to ok the project and it didn’t
school to ok the project and it didn’t they said no no way we are not letting a
they said no no way we are not letting a
they said no no way we are not letting a thirteen-year-old work with staph
thirteen-year-old work with staph
thirteen-year-old work with staph bacteria so this point I was like I
bacteria so this point I was like I
bacteria so this point I was like I wasn’t sure what to do next they said no
wasn’t sure what to do next they said no
wasn’t sure what to do next they said no picking on the topic but how could I
picking on the topic but how could I
picking on the topic but how could I pick another topic when I thought back
pick another topic when I thought back
pick another topic when I thought back to trip and all those other kids
to trip and all those other kids
to trip and all those other kids suffering with BB so I began to think
suffering with BB so I began to think
suffering with BB so I began to think where else could I go who else could
where else could I go who else could
where else could I go who else could possibly help me so I decided to reach
possibly help me so I decided to reach
possibly help me so I decided to reach out to local universities in the area
out to local universities in the area
out to local universities in the area and I got I learned to embrace the word
and I got I learned to embrace the word
and I got I learned to embrace the word no I emailed tons different professors
no I emailed tons different professors
no I emailed tons different professors and while I got a lot of those and I
and while I got a lot of those and I
and while I got a lot of those and I mean a lot of knows every single
mean a lot of knows every single
mean a lot of knows every single professor that I talked to led me to
professor that I talked to led me to
professor that I talked to led me to another person that could possibly help
another person that could possibly help
another person that could possibly help and then finally finally after hearing
and then finally finally after hearing
and then finally finally after hearing about my project and children suffering
about my project and children suffering
about my project and children suffering with me b1 professor decided to give me
with me b1 professor decided to give me
with me b1 professor decided to give me a chance
a chance
a chance that one yes is all it takes
that one yes is all it takes
that one yes is all it takes professor Jeffrey Boyd at Rutgers
professor Jeffrey Boyd at Rutgers
professor Jeffrey Boyd at Rutgers University decided to sponsor my
University decided to sponsor my
University decided to sponsor my experiment and thanks to him and his
experiment and thanks to him and his
experiment and thanks to him and his wonderful group of grad students I was
wonderful group of grad students I was
wonderful group of grad students I was able to go in grow the bacteria create
able to go in grow the bacteria create
able to go in grow the bacteria create varying concentrations of each solution
varying concentrations of each solution
varying concentrations of each solution then test each for its effectiveness my
then test each for its effectiveness my
then test each for its effectiveness my results proved that hypochlorous acid
results proved that hypochlorous acid
results proved that hypochlorous acid and the Nixle water was just as
and the Nixle water was just as
and the Nixle water was just as effective as killing bacteria as bleach
effective as killing bacteria as bleach
effective as killing bacteria as bleach was and it would be gentler on
was and it would be gentler on
was and it would be gentler on children’s skin so by not giving up by
children’s skin so by not giving up by
children’s skin so by not giving up by looking for my yes in that sea of nose
looking for my yes in that sea of nose
looking for my yes in that sea of nose finally I was able to accomplish my
finally I was able to accomplish my
finally I was able to accomplish my first project for Deborah so for any
first project for Deborah so for any
first project for Deborah so for any students out there sometimes you have to
students out there sometimes you have to
students out there sometimes you have to look beyond school to do more sometimes
look beyond school to do more sometimes
look beyond school to do more sometimes school have
school have
school have has to say no you can push yourself
has to say no you can push yourself
has to say no you can push yourself further so keep going and just because
further so keep going and just because
further so keep going and just because you get one now eventually you will find
you get one now eventually you will find
you get one now eventually you will find your guess out there so working with
your guess out there so working with
your guess out there so working with Brett I learned a few more things about
Brett I learned a few more things about
Brett I learned a few more things about him I learned that he was an EB dad
him I learned that he was an EB dad
him I learned that he was an EB dad which explained why he spent so many
which explained why he spent so many
which explained why he spent so many hours working at Deborah of America
hours working at Deborah of America
hours working at Deborah of America his daughter Rafi was born in 2007 in
his daughter Rafi was born in 2007 in
his daughter Rafi was born in 2007 in New York City and when she started
New York City and when she started
New York City and when she started listing her all over even doctors there
listing her all over even doctors there
listing her all over even doctors there did not know what was wrong with her in
did not know what was wrong with her in
did not know what was wrong with her in fact it took over a week for doctors to
fact it took over a week for doctors to
fact it took over a week for doctors to realize and diagnose Rafi with EB and
realize and diagnose Rafi with EB and
realize and diagnose Rafi with EB and then Bret was told there was no cure no
then Bret was told there was no cure no
then Bret was told there was no cure no treatment and no biotech or Pharma
treatment and no biotech or Pharma
treatment and no biotech or Pharma interest in such an overwhelming disease
interest in such an overwhelming disease
interest in such an overwhelming disease he was given no hope so Bret got
he was given no hope so Bret got
he was given no hope so Bret got involved with Deborah of America when
involved with Deborah of America when
involved with Deborah of America when Rafi was only three months old and from
Rafi was only three months old and from
Rafi was only three months old and from there he slowly began working more and
there he slowly began working more and
there he slowly began working more and more to try and find a way to help his
more to try and find a way to help his
more to try and find a way to help his daughter now after meeting the ever so
daughter now after meeting the ever so
daughter now after meeting the ever so charming six-year-old Rafi I knew my
charming six-year-old Rafi I knew my
charming six-year-old Rafi I knew my journey with DB was not over yet there
journey with DB was not over yet there
journey with DB was not over yet there was still more to do and now the new
was still more to do and now the new
was still more to do and now the new mission was to raise awareness now most
mission was to raise awareness now most
mission was to raise awareness now most of us know of ALS or at least
of us know of ALS or at least
of us know of ALS or at least participate in the ALS ice bucket
participate in the ALS ice bucket
participate in the ALS ice bucket challenge now the same people who suffer
challenge now the same people who suffer
challenge now the same people who suffer from ALS is the same people who suffer
from ALS is the same people who suffer
from ALS is the same people who suffer from EB but EB is mostly unknown so how
from EB but EB is mostly unknown so how
from EB but EB is mostly unknown so how would I just in fact the tagline for EB
would I just in fact the tagline for EB
would I just in fact the tagline for EB is the worst disease you’ve never heard
is the worst disease you’ve never heard
is the worst disease you’ve never heard of so how do I take this disease and
of so how do I take this disease and
of so how do I take this disease and make it the disease that everyone has
make it the disease that everyone has
make it the disease that everyone has heard about I knew the key could be
heard about I knew the key could be
heard about I knew the key could be video storytelling if it video was to go
video storytelling if it video was to go
video storytelling if it video was to go viral video could have a huge impact and
viral video could have a huge impact and
viral video could have a huge impact and educate people about EB but I didn’t
educate people about EB but I didn’t
educate people about EB but I didn’t know how to get these videos created so
know how to get these videos created so
know how to get these videos created so I started reaching out to different
I started reaching out to different
I started reaching out to different advertising and production companies the
advertising and production companies the
advertising and production companies the challenge this time was one yes was not
challenge this time was one yes was not
challenge this time was one yes was not going to be enough it takes many yeses
going to be enough it takes many yeses
going to be enough it takes many yeses to make a video however
to make a video however
to make a video however to hearing the story about Tripp and
to hearing the story about Tripp and
to hearing the story about Tripp and Rafi it was amazing to see how many
Rafi it was amazing to see how many
Rafi it was amazing to see how many businessmen and women became inspired
businessmen and women became inspired
businessmen and women became inspired and wanted to help the butterfly
and wanted to help the butterfly
and wanted to help the butterfly children thanks to the Havas humph
children thanks to the Havas humph
children thanks to the Havas humph Havas tonic advertising company and the
Havas tonic advertising company and the
Havas tonic advertising company and the entire crew at swing production company
entire crew at swing production company
entire crew at swing production company we were able to create not one but three
we were able to create not one but three
we were able to create not one but three videos pro bono for deborah of america
now and thank you and thanks to brett my
now and thank you and thanks to brett my mentor and his wife Jackie we are
mentor and his wife Jackie we are
mentor and his wife Jackie we are opening up their home for production we
opening up their home for production we
opening up their home for production we were able to get started now when Brett
were able to get started now when Brett
were able to get started now when Brett Rafi and Jackie all sat down they agreed
Rafi and Jackie all sat down they agreed
Rafi and Jackie all sat down they agreed to show this disease in the most
to show this disease in the most
to show this disease in the most authentic way possible to show what AV
authentic way possible to show what AV
authentic way possible to show what AV families really go through every single
families really go through every single
families really go through every single day this is one of the videos that was
day this is one of the videos that was
day this is one of the videos that was made it’s very very hard
made it’s very very hard
made it’s very very hard I was born for most TV you’ve never
I was born for most TV you’ve never
I was born for most TV you’ve never heard of epidermolysis bullosa which is
heard of epidermolysis bullosa which is
heard of epidermolysis bullosa which is a mouthful going on I know mom’s on a
a mouthful going on I know mom’s on a
a mouthful going on I know mom’s on a hook like watchdog but kidnapping Jesus
hook like watchdog but kidnapping Jesus
hook like watchdog but kidnapping Jesus heart physic fire is like beating me up
heart physic fire is like beating me up
heart physic fire is like beating me up and shot dog’s teeth digging into
but you do all over again tomorrow
but you do all over again tomorrow and the next day and every day for the
and the next day and every day for the
and the next day and every day for the rest of my life so thanks to those
rest of my life so thanks to those
rest of my life so thanks to those videos and their emotional impact they
videos and their emotional impact they
videos and their emotional impact they premiered at Deborah’s annual gala in
premiered at Deborah’s annual gala in
premiered at Deborah’s annual gala in New York City just last year and raised
New York City just last year and raised
New York City just last year and raised 3/4 of a million dollars amazingly all
3/4 of a million dollars amazingly all
3/4 of a million dollars amazingly all those words came from Raffy herself she
those words came from Raffy herself she
those words came from Raffy herself she came up with those metaphors to describe
came up with those metaphors to describe
came up with those metaphors to describe the pain that she feels every single day
the pain that she feels every single day
the pain that she feels every single day so after these videos were created I
so after these videos were created I
so after these videos were created I felt confident that awareness of EB
felt confident that awareness of EB
felt confident that awareness of EB would spread all over the United States
would spread all over the United States
would spread all over the United States raising awareness for a rare disease is
raising awareness for a rare disease is
raising awareness for a rare disease is hard and what’s trending one day is in
hard and what’s trending one day is in
hard and what’s trending one day is in the next medical researchers are joining
the next medical researchers are joining
the next medical researchers are joining together from Austria to the UK to the
together from Austria to the UK to the
together from Austria to the UK to the US to try and find a treatment or a cure
US to try and find a treatment or a cure
US to try and find a treatment or a cure for eBay they’re looking into stem-cell
for eBay they’re looking into stem-cell
for eBay they’re looking into stem-cell treatment and protein replacement along
treatment and protein replacement along
treatment and protein replacement along with gene therapy to try and find either
with gene therapy to try and find either
with gene therapy to try and find either treatment or cure for EB and for while
treatment or cure for EB and for while
treatment or cure for EB and for while these videos did help Deborah still
these videos did help Deborah still
these videos did help Deborah still faces challenges of raising awareness of
faces challenges of raising awareness of
faces challenges of raising awareness of a rare disease and while I have
a rare disease and while I have
a rare disease and while I have conducted many social media surveys and
conducted many social media surveys and
conducted many social media surveys and research media platforms time was still
research media platforms time was still
research media platforms time was still passing and new challenges just kept
passing and new challenges just kept
passing and new challenges just kept approaching and even with the past
approaching and even with the past
approaching and even with the past election it is even harder now for
election it is even harder now for
election it is even harder now for nonprofits to get the funds necessary to
nonprofits to get the funds necessary to
nonprofits to get the funds necessary to continue these programs I decided to go
continue these programs I decided to go
continue these programs I decided to go to a health and wellness conference to
to a health and wellness conference to
to a health and wellness conference to get some inspiration and while there I
get some inspiration and while there I
get some inspiration and while there I even met a new mentor who led me on to
even met a new mentor who led me on to
even met a new mentor who led me on to the stage today so go out and you never
the stage today so go out and you never
the stage today so go out and you never know who you’re going to meet
he I stand up here telling the story of
he I stand up here telling the story of trip Rafi and all those eb warriors
trip Rafi and all those eb warriors
trip Rafi and all those eb warriors because one businessman from london knew
because one businessman from london knew
because one businessman from london knew that the cost of doing nothing was too
that the cost of doing nothing was too
that the cost of doing nothing was too great and that is why I stand here today
great and that is why I stand here today
great and that is why I stand here today so finally I think a little bit of my
so finally I think a little bit of my
so finally I think a little bit of my confidence has come back from the states
confidence has come back from the states
confidence has come back from the states and I would encourage you to surround
and I would encourage you to surround
and I would encourage you to surround yourself with caring individuals who
yourself with caring individuals who
yourself with caring individuals who know that you are capable of more and if
know that you are capable of more and if
know that you are capable of more and if you don’t have them with you now go out
you don’t have them with you now go out
you don’t have them with you now go out and find them and embrace the word know
and find them and embrace the word know
and find them and embrace the word know in your life and go looking for those
in your life and go looking for those
in your life and go looking for those yeses and when you are called on to act
yeses and when you are called on to act
yeses and when you are called on to act because the cost of doing nothing is too
because the cost of doing nothing is too
because the cost of doing nothing is too great
great
great you’ll have the confidence to do so
you’ll have the confidence to do so
you’ll have the confidence to do so thank you
thank you
thank you [Applause]
”
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