the pop of the starter pistol shattered the damp air
the damp air
the damp air I felt the tug on the bungee cord it was
I felt the tug on the bungee cord it was
I felt the tug on the bungee cord it was time to go as I ran I felt hairline
time to go as I ran I felt hairline
time to go as I ran I felt hairline cracks in the pavement and the crunch of
cracks in the pavement and the crunch of
cracks in the pavement and the crunch of fallen leaves and the smoothness of
fallen leaves and the smoothness of
fallen leaves and the smoothness of painted traffic lines the world seemed
painted traffic lines the world seemed
painted traffic lines the world seemed silent except for the slap slap of my
silent except for the slap slap of my
silent except for the slap slap of my laces against the tops of my shoes the
laces against the tops of my shoes the
laces against the tops of my shoes the curved metal hook of the bungee cord
curved metal hook of the bungee cord
curved metal hook of the bungee cord felt clammy in my hand my running shoes
felt clammy in my hand my running shoes
felt clammy in my hand my running shoes and a trusted friend were taking me on a
and a trusted friend were taking me on a
and a trusted friend were taking me on a journey unlike any I’d ever experienced
journey unlike any I’d ever experienced
journey unlike any I’d ever experienced because I wasn’t just running I was
because I wasn’t just running I was
because I wasn’t just running I was running blindfolded one in ten people
running blindfolded one in ten people
running blindfolded one in ten people have a rare disease that’s thirty
have a rare disease that’s thirty
have a rare disease that’s thirty million Americans half of those are
million Americans half of those are
million Americans half of those are children and that learning on that
children and that learning on that
children and that learning on that course I wasn’t running away from rare I
course I wasn’t running away from rare I
course I wasn’t running away from rare I was running toward it rare disease had
was running toward it rare disease had
was running toward it rare disease had crashed into my life seven years earlier
crashed into my life seven years earlier
crashed into my life seven years earlier that’s when my sister Taylor was
that’s when my sister Taylor was
that’s when my sister Taylor was diagnosed with batten disease a rare
diagnosed with batten disease a rare
diagnosed with batten disease a rare brain disease that affects mostly kids
brain disease that affects mostly kids
brain disease that affects mostly kids batten disease has no known cure batten
batten disease has no known cure batten
batten disease has no known cure batten disease is fatal I’d never really
disease is fatal I’d never really
disease is fatal I’d never really thought about rare disease but suddenly
thought about rare disease but suddenly
thought about rare disease but suddenly I did a lot no cure that didn’t jive
I did a lot no cure that didn’t jive
I did a lot no cure that didn’t jive with my preconceived a would be my
with my preconceived a would be my
with my preconceived a would be my seven-year-old sister wanted to be a
seven-year-old sister wanted to be a
seven-year-old sister wanted to be a rock star and a fashion designer and a
rock star and a fashion designer and a
rock star and a fashion designer and a vet she got straight A’s in school and
vet she got straight A’s in school and
vet she got straight A’s in school and she gave our brother hell mom always
she gave our brother hell mom always
she gave our brother hell mom always joked that the youngest of her three
joked that the youngest of her three
joked that the youngest of her three children was also her easiest mostly
children was also her easiest mostly
children was also her easiest mostly because I got a rocky start
because I got a rocky start
because I got a rocky start when I was born I suffered a brain
when I was born I suffered a brain
when I was born I suffered a brain hemorrhage I had to have brain surgery
hemorrhage I had to have brain surgery
hemorrhage I had to have brain surgery and my doctors weren’t sure I’d ever
and my doctors weren’t sure I’d ever
and my doctors weren’t sure I’d ever walk problem-free let alone run half
walk problem-free let alone run half
walk problem-free let alone run half marathons or stand on the Ted stage but
marathons or stand on the Ted stage but
marathons or stand on the Ted stage but I healed on my own and my doctors never
I healed on my own and my doctors never
I healed on my own and my doctors never knew why
knew why
knew why I might have gotten a rocky start but my
I might have gotten a rocky start but my
I might have gotten a rocky start but my sister was always perfect she was born
sister was always perfect she was born
sister was always perfect she was born healthy smart and spunky beautiful and
healthy smart and spunky beautiful and
healthy smart and spunky beautiful and brave she could do anything but instead
brave she could do anything but instead
brave she could do anything but instead of growing up healthy and happy
of growing up healthy and happy
of growing up healthy and happy my sister would lose her eyesight her
my sister would lose her eyesight her
my sister would lose her eyesight her ability to walk and talk and swallow
ability to walk and talk and swallow
ability to walk and talk and swallow food
food
food she’d have seizures she’d have a short
she’d have seizures she’d have a short
she’d have seizures she’d have a short life after a few months of crying and
life after a few months of crying and
life after a few months of crying and wringing my hands and asking why her I
wringing my hands and asking why her I
wringing my hands and asking why her I started asking a different question what
started asking a different question what
started asking a different question what if what if I believed what if I believed
if what if I believed what if I believed
if what if I believed what if I believed I could save my sister’s life what if I
I could save my sister’s life what if I
I could save my sister’s life what if I believed she could be the first person
believed she could be the first person
believed she could be the first person to survive that and disease
to survive that and disease
to survive that and disease what if I believed she could live to
what if I believed she could live to
what if I believed she could live to achieve all of her dreams
achieve all of her dreams
achieve all of her dreams maybe my belief and the what if could
maybe my belief and the what if could
maybe my belief and the what if could save everything no Taylor always
save everything no Taylor always
save everything no Taylor always believed after she went blind she’s
believed after she went blind she’s
believed after she went blind she’s saying in the school talent show she
saying in the school talent show she
saying in the school talent show she went to the school dance with a date she
went to the school dance with a date she
went to the school dance with a date she learned Braille she even ran to five K’s
learned Braille she even ran to five K’s
learned Braille she even ran to five K’s see while the adults around my sister
see while the adults around my sister
see while the adults around my sister worried about her happiness and fretted
worried about her happiness and fretted
worried about her happiness and fretted about the future Taylor kept a smile on
about the future Taylor kept a smile on
about the future Taylor kept a smile on her face she didn’t ask for anything she
her face she didn’t ask for anything she
her face she didn’t ask for anything she didn’t complain when her vision faltered
didn’t complain when her vision faltered
didn’t complain when her vision faltered or she struggled in math she didn’t cry
or she struggled in math she didn’t cry
or she struggled in math she didn’t cry when she had to give up the long blonde
when she had to give up the long blonde
when she had to give up the long blonde hair she loved to have brain surgery my
hair she loved to have brain surgery my
hair she loved to have brain surgery my sister showed everyone else
sister showed everyone else
sister showed everyone else how to be brave Taylor’s courage
how to be brave Taylor’s courage
how to be brave Taylor’s courage inspired a movement and soon a little
inspired a movement and soon a little
inspired a movement and soon a little charity called Taylor’s tale achieved
charity called Taylor’s tale achieved
charity called Taylor’s tale achieved amazing things too we funded
amazing things too we funded
amazing things too we funded groundbreaking research we raised
groundbreaking research we raised
groundbreaking research we raised awareness worldwide we were moving
awareness worldwide we were moving
awareness worldwide we were moving mountains others that would stand
mountains others that would stand
mountains others that would stand forever and suddenly that disease seemed
forever and suddenly that disease seemed
forever and suddenly that disease seemed beatable but all that progress didn’t
beatable but all that progress didn’t
beatable but all that progress didn’t come quickly enough fundraising got
come quickly enough fundraising got
come quickly enough fundraising got harder and Taylor kept getting sicker
harder and Taylor kept getting sicker
harder and Taylor kept getting sicker batten disease have been whittling away
batten disease have been whittling away
batten disease have been whittling away at everything that made my sister whole
at everything that made my sister whole
at everything that made my sister whole since the moment she was born now it
since the moment she was born now it
since the moment she was born now it broken through my sister didn’t stop
broken through my sister didn’t stop
broken through my sister didn’t stop believing but somewhere along the way I
believing but somewhere along the way I
believing but somewhere along the way I did see I’d realized I couldn’t win the
did see I’d realized I couldn’t win the
did see I’d realized I couldn’t win the battle for Taylor’s life and on my worst
battle for Taylor’s life and on my worst
battle for Taylor’s life and on my worst days I questioned why I kept out a fight
days I questioned why I kept out a fight
days I questioned why I kept out a fight that wouldn’t even help my own family
fighting a rare disease it’s hard it’s
fighting a rare disease it’s hard it’s small patient numbers and crushing
small patient numbers and crushing
small patient numbers and crushing prognosis and shoestring budgets it’s
prognosis and shoestring budgets it’s
prognosis and shoestring budgets it’s working everyday to inspire people to
working everyday to inspire people to
working everyday to inspire people to care when rare is code for not me I
care when rare is code for not me I
care when rare is code for not me I wasn’t strong enough to face it and a
wasn’t strong enough to face it and a
wasn’t strong enough to face it and a big part of me wanted to quit to run
big part of me wanted to quit to run
big part of me wanted to quit to run away from rare backward in time to happy
away from rare backward in time to happy
away from rare backward in time to happy days I’d give anything to have back then
days I’d give anything to have back then
days I’d give anything to have back then one day I realized learning to see the
one day I realized learning to see the
one day I realized learning to see the world the way Taylor does might be my
world the way Taylor does might be my
world the way Taylor does might be my only way forward and that’s why I ran a
only way forward and that’s why I ran a
only way forward and that’s why I ran a half marathon blindfolded I couldn’t see
half marathon blindfolded I couldn’t see
half marathon blindfolded I couldn’t see the sky or the trees or the crowd or my
the sky or the trees or the crowd or my
the sky or the trees or the crowd or my guide but I could see my own life and
guide but I could see my own life and
guide but I could see my own life and our path forward more clearly than ever
for five months leading up to that race
for five months leading up to that race but I didn’t train for once to improve
but I didn’t train for once to improve
but I didn’t train for once to improve my fitness or my time instead I had to
my fitness or my time instead I had to
my fitness or my time instead I had to learn to navigate the world without the
learn to navigate the world without the
learn to navigate the world without the gift of sight to see with my ears and my
gift of sight to see with my ears and my
gift of sight to see with my ears and my nose and my skin all while running a
nose and my skin all while running a
nose and my skin all while running a nine minute mile now I know what you’re
nine minute mile now I know what you’re
nine minute mile now I know what you’re thinking running blind is crazy
thinking running blind is crazy
thinking running blind is crazy dangerous and it is my friend Andrew
dangerous and it is my friend Andrew
dangerous and it is my friend Andrew who’s here today offered to be my guide
who’s here today offered to be my guide
who’s here today offered to be my guide but only on one condition I had to
but only on one condition I had to
but only on one condition I had to promise I was okay with falling I still
promise I was okay with falling I still
promise I was okay with falling I still remember the first time I ran without my
remember the first time I ran without my
remember the first time I ran without my vision I grabbed one end of a bungee
vision I grabbed one end of a bungee
vision I grabbed one end of a bungee cord and I closed my eyes when the
cord and I closed my eyes when the
cord and I closed my eyes when the darkness came the bottom dropped out
darkness came the bottom dropped out
darkness came the bottom dropped out from under me like a roller coaster on
from under me like a roller coaster on
from under me like a roller coaster on the first big plunge I was on a track
the first big plunge I was on a track
the first big plunge I was on a track with marked lanes but I couldn’t run in
with marked lanes but I couldn’t run in
with marked lanes but I couldn’t run in a straight line my legs
a straight line my legs
a straight line my legs turned to jello like they did today and
turned to jello like they did today and
turned to jello like they did today and like they did the hot summer morning in
like they did the hot summer morning in
like they did the hot summer morning in 2006 when mom called and said Taylor has
2006 when mom called and said Taylor has
2006 when mom called and said Taylor has batten disease running blind the first
batten disease running blind the first
batten disease running blind the first time was tough but before long I ran in
time was tough but before long I ran in
time was tough but before long I ran in the dark without that roller coaster
the dark without that roller coaster
the dark without that roller coaster feeling I couldn’t see but I heard and
feeling I couldn’t see but I heard and
feeling I couldn’t see but I heard and smelled and felt the world in a whole
smelled and felt the world in a whole
smelled and felt the world in a whole new way I used all of my other senses to
new way I used all of my other senses to
new way I used all of my other senses to paint a picture the rustling of leaves
paint a picture the rustling of leaves
paint a picture the rustling of leaves in an unexpected breeze an old cars
in an unexpected breeze an old cars
in an unexpected breeze an old cars muffler as the driver inched past of
muffler as the driver inched past of
muffler as the driver inched past of crazy blindfolded person running in the
crazy blindfolded person running in the
crazy blindfolded person running in the street the sweet smells of fresh-cut
street the sweet smells of fresh-cut
street the sweet smells of fresh-cut grass and honeysuckle and meat on the
grass and honeysuckle and meat on the
grass and honeysuckle and meat on the grill
grill
grill the painted traffic lines beneath the
the painted traffic lines beneath the
the painted traffic lines beneath the soles of my shoes and the warmth of a
soles of my shoes and the warmth of a
soles of my shoes and the warmth of a soft summer rain on bare skin
soft summer rain on bare skin
soft summer rain on bare skin now Andrew had said I would fall and he
now Andrew had said I would fall and he
now Andrew had said I would fall and he was right
was right
was right and ten weeks then I did but I didn’t
and ten weeks then I did but I didn’t
and ten weeks then I did but I didn’t stop instead I took the blindfold and I
stop instead I took the blindfold and I
stop instead I took the blindfold and I tied it around my leg like a tourniquet
tied it around my leg like a tourniquet
tied it around my leg like a tourniquet but keep blood from trickling onto my
but keep blood from trickling onto my
but keep blood from trickling onto my brand-new shoes I closed my eyes and I
brand-new shoes I closed my eyes and I
brand-new shoes I closed my eyes and I kept going I think we ran another three
kept going I think we ran another three
kept going I think we ran another three miles that night you see Taylor always
miles that night you see Taylor always
miles that night you see Taylor always kept going in running ending life and
kept going in running ending life and
kept going in running ending life and when I trained I tried to be more like
when I trained I tried to be more like
when I trained I tried to be more like Taylor the friends asked me why I did
Taylor the friends asked me why I did
Taylor the friends asked me why I did what I did
what I did
what I did but I really didn’t understand why until
but I really didn’t understand why until
but I really didn’t understand why until after it was all over I ran blind to say
after it was all over I ran blind to say
after it was all over I ran blind to say kids like my sister are being blind to
kids like my sister are being blind to
kids like my sister are being blind to save myself and suddenly I saw
save myself and suddenly I saw
save myself and suddenly I saw everything running blind taught me to
everything running blind taught me to
everything running blind taught me to see the world from a different angle to
see the world from a different angle to
see the world from a different angle to see we are diseased from a different
see we are diseased from a different
see we are diseased from a different angle to see it for what it is an issue
angle to see it for what it is an issue
angle to see it for what it is an issue that affects us all now I’m in marketing
that affects us all now I’m in marketing
that affects us all now I’m in marketing and I have been known to say that rare
and I have been known to say that rare
and I have been known to say that rare disease has a branding problem because
disease has a branding problem because
disease has a branding problem because despite the name rare disease isn’t
despite the name rare disease isn’t
despite the name rare disease isn’t simply an issue that affects an
simply an issue that affects an
simply an issue that affects an unfortunate few Stephen Hawking has a
unfortunate few Stephen Hawking has a
unfortunate few Stephen Hawking has a rare disease Michael J Fox Venus
rare disease Michael J Fox Venus
rare disease Michael J Fox Venus Williams Tim Howard rare disease killed
Williams Tim Howard rare disease killed
Williams Tim Howard rare disease killed Harold Ramis and Bernie Mac and Lou
Harold Ramis and Bernie Mac and Lou
Harold Ramis and Bernie Mac and Lou Gehrig rare disease hits close to home
Gehrig rare disease hits close to home
Gehrig rare disease hits close to home each of us here today carries at least
each of us here today carries at least
each of us here today carries at least three devastating rare disease mutations
three devastating rare disease mutations
three devastating rare disease mutations the we could pass on to our own children
no one is immune to rare rare disease
no one is immune to rare rare disease affects me it affects you
affects me it affects you
affects me it affects you and by tackling rare disease we can
and by tackling rare disease we can
and by tackling rare disease we can reduce the huge burden on families in
reduce the huge burden on families in
reduce the huge burden on families in our health care system in our
our health care system in our
our health care system in our communities we can help the doctors who
communities we can help the doctors who
communities we can help the doctors who still have to tell a lot of families
still have to tell a lot of families
still have to tell a lot of families like mine I’m sorry there’s nothing we
like mine I’m sorry there’s nothing we
like mine I’m sorry there’s nothing we can do we can give the tailors of the
can do we can give the tailors of the
can do we can give the tailors of the world better quality of life and more
world better quality of life and more
world better quality of life and more tomorrow’s recognizing that rare is
tomorrow’s recognizing that rare is
tomorrow’s recognizing that rare is everywhere restored my will to face it
everywhere restored my will to face it
everywhere restored my will to face it it gave me another reason to fight it
it gave me another reason to fight it
it gave me another reason to fight it they’re running blind helped me survive
they’re running blind helped me survive
they’re running blind helped me survive more than just this fight against rare
more than just this fight against rare
more than just this fight against rare disease it taught me to view any bad
disease it taught me to view any bad
disease it taught me to view any bad situation as a noble challenge rather
situation as a noble challenge rather
situation as a noble challenge rather than an impassable wall running blind
than an impassable wall running blind
than an impassable wall running blind taught me to see that overcoming
taught me to see that overcoming
taught me to see that overcoming obstacles however big or small is all
obstacles however big or small is all
obstacles however big or small is all about changing our perspective believing
about changing our perspective believing
about changing our perspective believing we can turn tragedy into opportunity
we can turn tragedy into opportunity
we can turn tragedy into opportunity believing the while today might make us
believing the while today might make us
believing the while today might make us cry or scream tomorrow is always the
cry or scream tomorrow is always the
cry or scream tomorrow is always the second chance it’s been years since I
second chance it’s been years since I
second chance it’s been years since I crossed the finish line blindfolded but
crossed the finish line blindfolded but
crossed the finish line blindfolded but I still try to live my life by the
I still try to live my life by the
I still try to live my life by the lessons I learned in the dark to fight
lessons I learned in the dark to fight
lessons I learned in the dark to fight even if everyone else thinks the fight
even if everyone else thinks the fight
even if everyone else thinks the fight is hopeless to attack a disease people
is hopeless to attack a disease people
is hopeless to attack a disease people said it’d take billions of dollars to
said it’d take billions of dollars to
said it’d take billions of dollars to cure to stop using rare or not me as an
cure to stop using rare or not me as an
cure to stop using rare or not me as an excuse to do nothing to stay in the race
excuse to do nothing to stay in the race
excuse to do nothing to stay in the race even if we can’t see the finish line to
even if we can’t see the finish line to
even if we can’t see the finish line to reject the notion of impossible Taylor
reject the notion of impossible Taylor
reject the notion of impossible Taylor never believed an impossible she didn’t
never believed an impossible she didn’t
never believed an impossible she didn’t let batten disease stop her from doing
let batten disease stop her from doing
let batten disease stop her from doing the things that she wanted to do this is
the things that she wanted to do this is
the things that she wanted to do this is a kid in a true Taylor form families
a kid in a true Taylor form families
a kid in a true Taylor form families like ours refused to take no cure for an
like ours refused to take no cure for an
like ours refused to take no cure for an answer because if we all did that kids
answer because if we all did that kids
answer because if we all did that kids like Taylor
like Taylor
like Taylor would keep dying till the end of time
believing is working in 2015
believing is working in 2015 tailors law established the nation’s
tailors law established the nation’s
tailors law established the nation’s first rare disease Advisory Council here
first rare disease Advisory Council here
first rare disease Advisory Council here in North Carolina in 2017 the FDA
in North Carolina in 2017 the FDA
in North Carolina in 2017 the FDA approved the first treatment for batten
approved the first treatment for batten
approved the first treatment for batten more than a hundred years after an
more than a hundred years after an
more than a hundred years after an English doctor discovered the disease
English doctor discovered the disease
English doctor discovered the disease soon kids like my sister will be treated
soon kids like my sister will be treated
soon kids like my sister will be treated with gene therapy in a clinical trial
with gene therapy in a clinical trial
with gene therapy in a clinical trial gene therapies been in the news this
gene therapies been in the news this
gene therapies been in the news this week gene therapy attacks terrible
week gene therapy attacks terrible
week gene therapy attacks terrible diseases by targeting the faulty gene
diseases by targeting the faulty gene
diseases by targeting the faulty gene and replacing it with a healthy copy it
and replacing it with a healthy copy it
and replacing it with a healthy copy it could be a forever fix thanks in part to
could be a forever fix thanks in part to
could be a forever fix thanks in part to Taylor’s tale the fight against rare
Taylor’s tale the fight against rare
Taylor’s tale the fight against rare disease is moving forward by leaps and
disease is moving forward by leaps and
disease is moving forward by leaps and bounds instead of single steps
bounds instead of single steps
bounds instead of single steps we’re running not crawling sometimes
we’re running not crawling sometimes
we’re running not crawling sometimes though the hardest things we face in
though the hardest things we face in
though the hardest things we face in life run faster than we do today Taylor
life run faster than we do today Taylor
life run faster than we do today Taylor should be a college sophomore instead
should be a college sophomore instead
should be a college sophomore instead she’s at home blind and wheelchair-bound
she’s at home blind and wheelchair-bound
she’s at home blind and wheelchair-bound she can’t speak or swallow food I always
she can’t speak or swallow food I always
she can’t speak or swallow food I always wanted my sister to be the first person
wanted my sister to be the first person
wanted my sister to be the first person I hugged after I ran a half marathon
I hugged after I ran a half marathon
I hugged after I ran a half marathon blindfolded for her she was too sick to
blindfolded for her she was too sick to
blindfolded for her she was too sick to come my little sister won’t survive
come my little sister won’t survive
come my little sister won’t survive batten disease we’re too late but
batten disease we’re too late but
batten disease we’re too late but somebody will because we’re running
somebody will because we’re running
somebody will because we’re running toward rare and that I can see thank you
toward rare and that I can see thank you
toward rare and that I can see thank you you
”
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