from the instant we’re born expectations
are set yet all too often our perfect
expectations falter when confronted with
obstacles whether in the form of
disappointments or even life-changing
events life will often take a path that
is different from what we expected it to
be but that doesn’t stop us from fearing
when it does when we don’t have control
over the path life takes us on it’s your
perspective in response to this
adversity that matters being resilient
is one of the most powerful tools we
have sometimes we even purposely break
the expectations others have set for us
people inherently have a rebellious side
to defy these expectations and make what
the other side impossible possible this
is a phenomenon that has continued to
amaze me
and his especially near to my heart this
is a picture of me and my cousin Charlie
about seven years old tear and there’s
not much of a difference between us
we’re only two days apart but pictures
can be deceiving fast forward to today
and Charlie and I are both juniors in
high school he’s a happy hilarious high
school student going through each day
thinking about the same things we do
what outfit he’s gonna show off at
school today
how’d he do on that test wondering if
he’s gonna pass his written driving exam
and most recently thinking about which
colleges he might apply to in the fall
but there’s something behind this
picture what it doesn’t show is that our
paths in life had already begun to
diverge because when Charlie was 3 years
old he was diagnosed with Duchenne
muscular dystrophy the most fatal
genetic disease to understand what that
means
imagine yourself standing at the edge of
a cliff with the other side just beyond
your reach
your one goal in life is to get to the
other side safely it’s no problem though
there’s a bridge just cross over and
continue along your journey but take
away this bridge and suddenly you’re
stuck finding yourself unable to
continue along any normal path at all in
the context of our bodies a protein
called dystrophic
is this bridge it’s what makes us all be
able to walk breathe and get our hearts
pumping things we don’t even think about
doing
our day-to-day lives but for the
children suffering from Duchenne there
is no bridge to the healthy normal life
on the other side
their bodies cannot produce the
dystrophin protein leaving them
vulnerable to painful muscle atrophy
Charlie is only one of about 20,000 boys
in America suffering from this disease
it affects all muscular systems in the
body including the heart and lungs by
early teens most are wheelchair-bound
and by their late twenties all will
succumb to heart or lung failure this
rare disease attacks quickly and demands
our attention affecting young boys most
severely due to an X chromosome defect
Duchenne is usually a hereditary is
hereditary passed on to all boys in the
family but in 35 percent of cases the
gene mutated spontaneously with no
warning at all as it did with Charlie by
chance he got stuck with this disease
that pervades every muscle in his body
making each day a challenge over 200
thousand kids are affected worldwide and
there is zero percent chance of survival
so you can only begin to understand the
shock my aunt and uncle two Harvard
graduates with three young kids and big
plans for that big bright future had in
hearing that their perfectly healthy
toddler actually had one of the most
fatal diseases so guaranteed an outcome
that even the doctors who had diagnosed
Charlie said that there was nothing that
could be done no cure no hope and 100%
fatal yet remarkably they didn’t stop
and give up given a death sentence
rather than a diagnosis my aunt Tracy
and uncle Benji determined to fight
relentlessly to save their son and
others like him so they found a
Charlie’s fund a nonprofit organization
aimed at funding the groundbreaking
research needed to find a cure and for
the past 14 years
Charlie’s fund has spearheaded huge
movements in research and awareness to
help save the next generation of boys
before it’s too late
thanks to their tireless effort there is
growing optimism for the families of
boys affected by Duchene with each new
discovery there’s a new piece of hope
for these boys give
strength of them when they are at their
physical weakest the fight against her
Shen is not only one against the clock
but it’s also been about fighting all
the things that get in the way of your
efforts again life always seems to take
just another turn when things start
looking better in this case they now had
to fight against regulatory agencies
like the FDA time is not in our side
when fighting Duchene which is why it
was so crucial not to back down even
when the FDA delayed approval for a
promising treatment called the tup
Larssen in 2013
the race to yes was founded as a social
media driven campaign advocating for
petitions to fast-track this drug to
approval and most importantly helped
organise scientists doctors and families
of children affected by Duchenne to
lobby Congress the testimonies from the
parents of the boys with Duchenne on
Capitol Hill including those from my
aunt and uncle revealed raw and
heartbreaking truths about the fate of
their sons personally I was able to meet
with congressman Ted Deutsch while in
middle school explained to him our
situation and he agreed to help me by
writing a letter to the Commissioner of
the FDA despite all these efforts it
ended up taking three years for a
Templar sin to get approval now Charlie
and I really are growing up at the same
time and it’s given me a unique
perspective of seeing the different
parallels between my life and his well I
spend my time not in sports ocker
practices and games Charlie had to go
off week after week to hospitals around
the country getting scrutinized in
clinical trials while all the while
still going to school like any other
teenager would and handling the same
basic issues we do in growing up and
figuring out who we want to be but it’s
especially hard to figure out who you
want to be when you don’t even know if
you have a chance to get to that point I
see how hard it is for him to walk now
how he has to be carried up and down the
stairs the hours of physical therapy
exercises and stretches and ridiculous
number of pills and concoctions he has
to take each day just to maintain daily
function well I continue to grow at 17
years old Charlie’s only a little bit
taller than we were
and that first picture at 7:00 the
hardest part for me is seeing the pain
he’s in from his muscles deteriorating
and knowing there’s nothing I can do
about it
but the most remarkable part of
Charlie’s story is his reaction and
response it’s so easy to see this
situation these impossible odds and just
give up without a second thought
fighting these obstacles is not just
physically painful but also mentally and
emotionally draining
rather than succumbing to this however
Charlie has surpassed everyone’s
expectations in finding his own unique
path obviously he has had to come to
terms with the implications of his
disease however Charlie recognizes that
if he’s only here for a shorter time
than we thought that just means that
there’s no time to waste
in self-pity he’s living this exciting
life making as many good memories as he
can while trying not to focus on the
inevitable Charlie’s been living with
this disease for 17 years and whenever I
speak to him he’s never down or
depressed he’s honest about the physical
limitations of this disease and has
found a way to carry on beyond those
limits and have fun and just be a
regular teenager Charlie is making his
own unique path albeit with many twists
and turns but he’s pursuing his dreams
in the present because he knows his
future is limited this is something even
Snoop Dogg can attest to Charlie’s
attitude creates a fascinating paradox
of living within strict limits at the
same time living beyond all expectations
but that’s the thing the main idea of
how to get through any of these
challenges it’s not that life give you
the extra sour lemons over the regular
old ones and that you’ve fought it’s
that you take them and then finds a way
to make lemonade regardless growing up
isn’t an easy feat and we all face
obstacles along the way but the truth is
there’s no guarantee that any of us will
live our lives the way we want them to
let alone at all the strength Charlie
demonstrates each day has fer been far
beyond everyone’s expectations including
my own and if I were in the same
situation I certainly would not have had
the same reaction he is having just
recently I reach a point of renewed
Clare
I’m just how extraordinary Charlie’s
attitude really is earlier this year I
got stress fractures in my back from
track and travel soccer for the second
time and I was forced to quit both my
school and travel soccer teams after
basically my entire life for the next
few months for the past few months many
of you have probably known me as the
girl with the rolling backpack clunking
around the hallways and trying to hide
my brace under loose clothes it turns
out stress fractures are actually a
pretty common injury but stuck as I was
in my own personal bubble I was
devastated to being told I had to stop
what I loved most again
this was only temporary I’m making a
full recovery and I’ll be back to my
normal life very soon I only had to have
a rolling backpack but at the same time
this was going on Charlie had to finally
start using an electric wheelchair to
get around school because it was too
painful for him to walk anymore and here
is where the biggest difference between
us lies yes this was a sign that the
next phase of Duchenne was rapidly
encroaching and trying to place yet
another limit on his life but to Charlie
it was also a tool for independence he
doesn’t think of this as a limitation
but as a liberation it’s giving him the
mobility and freedom he didn’t have
while trying to walk Charlie’s response
to this translates a universal message
of finding happiness even when hope
isn’t always there there’s not a day
that goes by where I don’t think about
Charlie and what he has to go through on
a daily basis I think to myself God if
he can find a way to live a life with
purpose then why can’t I and things that
are so insignificant by comparison these
challenges that we all face are not an
end but rather just a new opportunity a
new chance to make the most of the
present and the proof is all around us
without those people who attempt to make
the impossible possible there would
never be progress or success some might
say that the fight against Duchenne
muscular dystrophy is not a fight at all
because we know the outcome but this is
just another expectation my the
researchers the scientists and Charlie
himself must break in order to save his
life and the
thousands of other boys like him be
courageous enough that when you were
told you can’t do something say that it
is not good enough make your own path
defying expectations in order to reach
your goals I hope you take Charlie Story
to heart
and find a way to look at your life just
a little bit differently be
conscientious in your response to
adversity because that is a deciding
factor to break expectations by taking
responsibility of our new realities we
can find a way to make those hurdles in
life just a little bit shorter thank you [Applause]
are set yet all too often our perfect
expectations falter when confronted with
obstacles whether in the form of
disappointments or even life-changing
events life will often take a path that
is different from what we expected it to
be but that doesn’t stop us from fearing
when it does when we don’t have control
over the path life takes us on it’s your
perspective in response to this
adversity that matters being resilient
is one of the most powerful tools we
have sometimes we even purposely break
the expectations others have set for us
people inherently have a rebellious side
to defy these expectations and make what
the other side impossible possible this
is a phenomenon that has continued to
amaze me
and his especially near to my heart this
is a picture of me and my cousin Charlie
about seven years old tear and there’s
not much of a difference between us
we’re only two days apart but pictures
can be deceiving fast forward to today
and Charlie and I are both juniors in
high school he’s a happy hilarious high
school student going through each day
thinking about the same things we do
what outfit he’s gonna show off at
school today
how’d he do on that test wondering if
he’s gonna pass his written driving exam
and most recently thinking about which
colleges he might apply to in the fall
but there’s something behind this
picture what it doesn’t show is that our
paths in life had already begun to
diverge because when Charlie was 3 years
old he was diagnosed with Duchenne
muscular dystrophy the most fatal
genetic disease to understand what that
means
imagine yourself standing at the edge of
a cliff with the other side just beyond
your reach
your one goal in life is to get to the
other side safely it’s no problem though
there’s a bridge just cross over and
continue along your journey but take
away this bridge and suddenly you’re
stuck finding yourself unable to
continue along any normal path at all in
the context of our bodies a protein
called dystrophic
is this bridge it’s what makes us all be
able to walk breathe and get our hearts
pumping things we don’t even think about
doing
our day-to-day lives but for the
children suffering from Duchenne there
is no bridge to the healthy normal life
on the other side
their bodies cannot produce the
dystrophin protein leaving them
vulnerable to painful muscle atrophy
Charlie is only one of about 20,000 boys
in America suffering from this disease
it affects all muscular systems in the
body including the heart and lungs by
early teens most are wheelchair-bound
and by their late twenties all will
succumb to heart or lung failure this
rare disease attacks quickly and demands
our attention affecting young boys most
severely due to an X chromosome defect
Duchenne is usually a hereditary is
hereditary passed on to all boys in the
family but in 35 percent of cases the
gene mutated spontaneously with no
warning at all as it did with Charlie by
chance he got stuck with this disease
that pervades every muscle in his body
making each day a challenge over 200
thousand kids are affected worldwide and
there is zero percent chance of survival
so you can only begin to understand the
shock my aunt and uncle two Harvard
graduates with three young kids and big
plans for that big bright future had in
hearing that their perfectly healthy
toddler actually had one of the most
fatal diseases so guaranteed an outcome
that even the doctors who had diagnosed
Charlie said that there was nothing that
could be done no cure no hope and 100%
fatal yet remarkably they didn’t stop
and give up given a death sentence
rather than a diagnosis my aunt Tracy
and uncle Benji determined to fight
relentlessly to save their son and
others like him so they found a
Charlie’s fund a nonprofit organization
aimed at funding the groundbreaking
research needed to find a cure and for
the past 14 years
Charlie’s fund has spearheaded huge
movements in research and awareness to
help save the next generation of boys
before it’s too late
thanks to their tireless effort there is
growing optimism for the families of
boys affected by Duchene with each new
discovery there’s a new piece of hope
for these boys give
strength of them when they are at their
physical weakest the fight against her
Shen is not only one against the clock
but it’s also been about fighting all
the things that get in the way of your
efforts again life always seems to take
just another turn when things start
looking better in this case they now had
to fight against regulatory agencies
like the FDA time is not in our side
when fighting Duchene which is why it
was so crucial not to back down even
when the FDA delayed approval for a
promising treatment called the tup
Larssen in 2013
the race to yes was founded as a social
media driven campaign advocating for
petitions to fast-track this drug to
approval and most importantly helped
organise scientists doctors and families
of children affected by Duchenne to
lobby Congress the testimonies from the
parents of the boys with Duchenne on
Capitol Hill including those from my
aunt and uncle revealed raw and
heartbreaking truths about the fate of
their sons personally I was able to meet
with congressman Ted Deutsch while in
middle school explained to him our
situation and he agreed to help me by
writing a letter to the Commissioner of
the FDA despite all these efforts it
ended up taking three years for a
Templar sin to get approval now Charlie
and I really are growing up at the same
time and it’s given me a unique
perspective of seeing the different
parallels between my life and his well I
spend my time not in sports ocker
practices and games Charlie had to go
off week after week to hospitals around
the country getting scrutinized in
clinical trials while all the while
still going to school like any other
teenager would and handling the same
basic issues we do in growing up and
figuring out who we want to be but it’s
especially hard to figure out who you
want to be when you don’t even know if
you have a chance to get to that point I
see how hard it is for him to walk now
how he has to be carried up and down the
stairs the hours of physical therapy
exercises and stretches and ridiculous
number of pills and concoctions he has
to take each day just to maintain daily
function well I continue to grow at 17
years old Charlie’s only a little bit
taller than we were
and that first picture at 7:00 the
hardest part for me is seeing the pain
he’s in from his muscles deteriorating
and knowing there’s nothing I can do
about it
but the most remarkable part of
Charlie’s story is his reaction and
response it’s so easy to see this
situation these impossible odds and just
give up without a second thought
fighting these obstacles is not just
physically painful but also mentally and
emotionally draining
rather than succumbing to this however
Charlie has surpassed everyone’s
expectations in finding his own unique
path obviously he has had to come to
terms with the implications of his
disease however Charlie recognizes that
if he’s only here for a shorter time
than we thought that just means that
there’s no time to waste
in self-pity he’s living this exciting
life making as many good memories as he
can while trying not to focus on the
inevitable Charlie’s been living with
this disease for 17 years and whenever I
speak to him he’s never down or
depressed he’s honest about the physical
limitations of this disease and has
found a way to carry on beyond those
limits and have fun and just be a
regular teenager Charlie is making his
own unique path albeit with many twists
and turns but he’s pursuing his dreams
in the present because he knows his
future is limited this is something even
Snoop Dogg can attest to Charlie’s
attitude creates a fascinating paradox
of living within strict limits at the
same time living beyond all expectations
but that’s the thing the main idea of
how to get through any of these
challenges it’s not that life give you
the extra sour lemons over the regular
old ones and that you’ve fought it’s
that you take them and then finds a way
to make lemonade regardless growing up
isn’t an easy feat and we all face
obstacles along the way but the truth is
there’s no guarantee that any of us will
live our lives the way we want them to
let alone at all the strength Charlie
demonstrates each day has fer been far
beyond everyone’s expectations including
my own and if I were in the same
situation I certainly would not have had
the same reaction he is having just
recently I reach a point of renewed
Clare
I’m just how extraordinary Charlie’s
attitude really is earlier this year I
got stress fractures in my back from
track and travel soccer for the second
time and I was forced to quit both my
school and travel soccer teams after
basically my entire life for the next
few months for the past few months many
of you have probably known me as the
girl with the rolling backpack clunking
around the hallways and trying to hide
my brace under loose clothes it turns
out stress fractures are actually a
pretty common injury but stuck as I was
in my own personal bubble I was
devastated to being told I had to stop
what I loved most again
this was only temporary I’m making a
full recovery and I’ll be back to my
normal life very soon I only had to have
a rolling backpack but at the same time
this was going on Charlie had to finally
start using an electric wheelchair to
get around school because it was too
painful for him to walk anymore and here
is where the biggest difference between
us lies yes this was a sign that the
next phase of Duchenne was rapidly
encroaching and trying to place yet
another limit on his life but to Charlie
it was also a tool for independence he
doesn’t think of this as a limitation
but as a liberation it’s giving him the
mobility and freedom he didn’t have
while trying to walk Charlie’s response
to this translates a universal message
of finding happiness even when hope
isn’t always there there’s not a day
that goes by where I don’t think about
Charlie and what he has to go through on
a daily basis I think to myself God if
he can find a way to live a life with
purpose then why can’t I and things that
are so insignificant by comparison these
challenges that we all face are not an
end but rather just a new opportunity a
new chance to make the most of the
present and the proof is all around us
without those people who attempt to make
the impossible possible there would
never be progress or success some might
say that the fight against Duchenne
muscular dystrophy is not a fight at all
because we know the outcome but this is
just another expectation my the
researchers the scientists and Charlie
himself must break in order to save his
life and the
thousands of other boys like him be
courageous enough that when you were
told you can’t do something say that it
is not good enough make your own path
defying expectations in order to reach
your goals I hope you take Charlie Story
to heart
and find a way to look at your life just
a little bit differently be
conscientious in your response to
adversity because that is a deciding
factor to break expectations by taking
responsibility of our new realities we
can find a way to make those hurdles in
life just a little bit shorter thank you [Applause]
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