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