I was 10
death in the face
and 11 when I earned a Purple Heart I
was wounded in battle in a war I was
drafted into that I didn’t even know
existed and not one I wanted to fight
this wasn’t a war in Afghanistan or Iraq
this is a war fought right here at home
where the enemy attacks from inside you
and the weapons are prescribed by
doctors I was diagnosed with cancer when
I was 10
I’d injured my hip playing soccer and it
didn’t get better we saw an orthopedist
and I was treated for a broken growth
plate on my hip the pain got worse over
the course of the fall until it was so
bad that it kept me up at night and I
could barely walk by Thanksgiving it was
clear I needed a scan I had gone from
walking to crutches to a wheelchair in
three days it was also at this point
that I learned I was violently allergic
to narcotics which is not the best thing
to be allergic to when you’re facing a
bone cancer diagnosis but oh well when
the scans came back I knew it must have
been bad because we were sent
immediately to a top Children’s Hospital
to see both orthopedics and oncology I
was admitted for a week of surgery tests
scans diagnosis and my first round of
chemotherapy I was diagnosed with pelvic
Ewing sarcoma which is a pediatric bone
cancer my tumor was the size of a melon
and it took up my entire hip and went
down into my leg for the next ten months
I lived in the hospital every other week
for many rounds of inpatient chemo and
surgeries for my cancer the chemos
administered over a few days so I would
check into clinic on Monday morning and
then go home Friday night for a week
while I waited for the chemo to kill all
of the fast-growing cells in my body in
between rounds I would be in four
clinics counts blood transfusions and
neutropenic fevers chemo or poison as I
called it was the chemical weapon
doctors had available for my war one
chemo was actually derived from mustard
gas as I lay there in my hospital bed
for my first round of chemo the nurse
came in with what looked like a hazmat
suit with gown gloves and mask
I asked her why she had all that
protective gear on this she put a large
red syringe partially covered in a
garbage bag until one of the pumps on my
IV pole and without looking up from her
work she looked at me and without
looking up she looked at me right she
said because this can’t come into
contact with human skin oh really but
you’re pumping it into my body I thought
that there was something seriously wrong
with this image of pumping toxic
chemicals into a growing child but it
was my best chance for survival
from the start the doctors told me they
would likely need to amputate a quarter
of my body from the hip down on one side
kind of an unimaginable concept for a
ten-year-old or anyone for that matter
but luckily after six rounds of chemo my
tumor had shrunken enough that my
surgeon could save my leg
I had a Hemi pal vechta me to remove my
hip tumor and any other tissue that had
been infiltrated by the cancer I was in
a spike a cast for six weeks and then
it’s like a brace for another eight I
spent the summer between fifth and sixth
grade learning how to walk without a hip
after 14 rounds of chemo I finished my
cancer treatments quite literally
earning a Purple Heart it was awarded to
me by my Hospital through a national
non-profit program for cancer kids
called beads of courage and you get to
add a Purple Heart when you get to the
end of your cancer treatments the bad
news was my post treatment scans were
not clear there were areas of concern on
my femoral head and tailbone
I knew that this cancer was very
aggressive and that if it came back
there were no treatment options so with
my femoral head and tailbone lighting up
my doctors told me that it would be my
last summer and that my family should
pack up and go on our last family
vacation that was nine years ago and
Here I am to have been wrong I’m not out
of the woods yet for Ewing sarcoma the
remission period is ten years which
means I have to wait until I’m 21 I call
myself a survivor there’s also a 50%
remit the 50% recurrence rate and if it
does there’s no
and cure but I’m just one year away when
I was diagnosed I had no idea at the
time
just how big our battalion of soldiers
was I was told
childhood cancer was rare and felt there
weren’t many in our army but at the time
of my diagnosis there were 40,000
children in the United States battling
the same battle for their lives and a
million children worldwide 40,000 other
soldiers fighting alongside me with
16,000 new recruits drafted each year
some were at war for several years this
didn’t just seem rare and insignificant
to me currently in the u.s. one in every
285 kids is diagnosed with cancer and
that incidence rate increases by six
percent every year some of these child
soldiers have no weapons to fight with
when kids and underdeveloped nations are
diagnosed with cancer they are often
sent home to die because they don’t have
access to the treatments we have for
those of us in the United States and
other developed nations we’re the lucky
ones we have treatment facilities drugs
radiation and surgery is available to us
what we have here isn’t enough but at
least we have options so that we can
fight for the chance to grow up
treatment protocols for cancers vary by
each type but in general it takes about
10 months to fight solid tumors and up
to three years for some forms of
leukemia for me I had 14 rounds of
inpatient chemo and some surgeries what
I saw was lots of little bald kids
riding their IV poles down the hallway
or being pulled in red wagons with their
IV poles in tow three of my friends Maya
Tori and Sammy would always bring their
American Girl dolls to the hospital have
playdates in each other’s rooms
we buried Maya in 2014 after her fifth
it was surreal to me to see these little
kids acting as normal as they could all
while enduring brutal chemo regimens
radiation sessions and devastating
surgeries they should have been on the
playground at school or in their own
little beds at night instead of living
in the hospital having two’s of toxic
chemicals pumped into them from beeping
machines a day for me wasn’t too bad
I had Xbox I took it one day at a time
one milestone at a time embraced every
breath as a gift and took every
opportunity that I could to speak out
about childhood cancer and raised
research funds for my hospital
I planned to survive we all did
we had futures ahead of us what really
changed things for me was when I learned
that our soldiers were dying here I was
about nine rounds in in my big blue body
cast and the hospital gets very quiet
after about 8:00 p.m. it’s a Children’s
Hospital after all kids need to sleep
and my mom and I had just finished
Washington a movie was probably 11:30 we
were getting ready for bed and all of a
sudden there was a break in the silence
a crash and a scream and when you’re on
an oncology for those noises really only
Michael was three years old I realized
that night that Michael would never grow
up he would never graduate high school
he would never get married he would
never have children and the worst part
is that no one really knew the world did
not stop to remember Michael it didn’t
make the news
his loss did not cause corporations to
rethink their corporate giving
structures even people on the same
oncology floor it didn’t know Michael
died I had to do something I had learned
about the incidence rates the treatment
protocols and their shortcomings the
funding gap and the truth behind
survivorship rates so I turned to my mom
and I said someone really needs to make
some noise about this and she turned
back and said yeah you’re right
someone really does and after a few more
seconds she realized that I wanted to be
that somebody I laid out my whole plan
for starting a foundation for pediatric
cancer research I wanted to get on the
national talk circuit to educate people
about childhood cancer and how urgent
the cause is I wanted to have headlining
musicians do music benefit concerts for
pediatric cancer research and thankfully
I have the world’s best mom so she
turned back to me and said okay let’s do
it of course I had to finish my own
cancer battle first before I could wage
war against childhood cancer as a whole
so I finished my treatments over the
summer and officially incorporated make
some noise cure kids cancer on September
24 2009 from there we hit the ground
running we had our first fundraiser the
next day a car wash at the local church
with the live band of course and in
January 2010 we had our kickoff gala
raising a hundred and ten thousand
dollars in one night by March we
released our first awareness video
called one in 320 which was the cancer
incidence rate in children at the time
and I outlined my story on behalf of the
children who cannot in an effort to
describe how urgent this cause is in the
next few years we incorporated chapters
in Seattle Denver wasp Boston and
Western New York as well as creating new
fundraisers and campaigns to further the
cause we created the heroes run in which
participants can earn the privilege of
wearing a gold cape to show their
heroism for kids cancer by raising a
hundred dollars on their sponsorship
page we renamed our annual gala noise
night and encouraged people around the
country to host their own noise night
events around the country so that we can
be making the most noise possible a
large portion of our funds come from
grassroots events like school
fundraisers and church collections etc
by the time I was 18 we had raised two
million dollars for pediatric cancer
research then the type of research that
we fund depends on the kind of cancer
because each pediatric cancer is at a
different place in their research
advancement so for tumors that are a
little further behind we fund basic
science which would be like identifying
the gene that triggers the tumor
creating a tumor bank so that
researchers can better understand how it
behaves we try and look for specific
translational research studies for
cancers that are further along we both
look at preclinical and clinical work
what would be things like bypassing the
blood blood-brain barrier for brain
tumors or amino there appeals and other
amazing work like that we try and move
research to the next level so that we
can be saving more lives because that’s
what’s important however with the NIH
budget continuing to shrink researchers
are spending up to 75% of their time
just trying to get the money to do their
research we can’t allow our progress in
research to stagnate or even evaporate
due to a budget issue this is where
foundations like make some noise come in
we bridge the funding gap we make sure
that these researchers have the
resources they need to conduct their
amazing work and that we can save more
lives not only save them but save them
more effectively with less long-term
side effects perhaps my favorite project
would make some noise it’s called the
National Angel quilt the idea was
conceived by my mom during a period
where we had lost four friends in two
weeks driving home from one of the
funerals my mom was desperately
searching for a way to honor these
children and show that they’re not just
numbers on a piece of paper these are
real children that would have grown up
to become doctors teachers musicians
scientists and leaders who knows who
we’ve lost already who will lose
tomorrow or next week so she thought
about the AIDS quilt and how impactful
that was on changing the country’s
perspective on AIDS and came up with the
idea of an organized memory quilt for
childhood cancer victims as it is right
now any childhood cancer victim who has
earned their angel wings
due to their battle is eligible to be on
the quilt and due to HIPAA laws we can’t
find them ourselves of course so we rely
on family members to submit their loved
beyond make some noise the foundation is
a founding member of the coalition
against childhood cancer which is a
coalition of pediatric cancer
foundations that support family support
research advocacy awareness and and
things like that and what we’ve been
able to do through the coalition is work
with many other foundations to create a
first-of-its-kind research conference
where all of the stakeholders in
childhood cancer are brought together
the foundations the researchers
pharmaceutical companies government
regulators typically these conferences
are just the researchers or just
pharmaceutical companies what have you
we brought everyone together for the
first time today we continue our work
with CAC – the coalition and on our own
I won’t stop making noise until these
cures are found I’ve lost too many
friends and I keep losing more but
making noise can be applied to many more
things besides cancer research when
you’re faced with adversity or injustice
it empowers you to be the voice to bear
witness and share it with the world
in post 9/11 New York the New York Metro
Transit Authority came up with the
slogan if you see something say
something this was done in a call to
action plea so that the citizens could
help the police protect the people
cities are huge and there just aren’t
enough police to see everything so they
were relying on laypeople to look for a
suspicious behavior or unattended bags
and things like that and what they were
doing in effect is educating everyone
that their voice can change the world
your voice can save a train load of
passengers your voice can save a local
landmark from demolition help save an
endangered species changed laws just
look at Florida today a few and raged
high school students have been able to
change gun laws in Florida and possibly
change national laws it doesn’t matter
how old you are it doesn’t matter how
young you are an 11 year old can start a
foundation for pediatric cancer research
or some raging grannies can fight for
your social services too often I see
people faced with adversity and they sit
and feel sorry for themselves and I
always ask why if you’re alive active
change can come in any size and its
impact can be profound all you need is
to grab your passion use your brain and
fight with everything you have until
change is made and then keep fighting
thank you and thank you to the
University of Rochester TEDx team for
this amazing event [Applause]
death in the face
and 11 when I earned a Purple Heart I
was wounded in battle in a war I was
drafted into that I didn’t even know
existed and not one I wanted to fight
this wasn’t a war in Afghanistan or Iraq
this is a war fought right here at home
where the enemy attacks from inside you
and the weapons are prescribed by
doctors I was diagnosed with cancer when
I was 10
I’d injured my hip playing soccer and it
didn’t get better we saw an orthopedist
and I was treated for a broken growth
plate on my hip the pain got worse over
the course of the fall until it was so
bad that it kept me up at night and I
could barely walk by Thanksgiving it was
clear I needed a scan I had gone from
walking to crutches to a wheelchair in
three days it was also at this point
that I learned I was violently allergic
to narcotics which is not the best thing
to be allergic to when you’re facing a
bone cancer diagnosis but oh well when
the scans came back I knew it must have
been bad because we were sent
immediately to a top Children’s Hospital
to see both orthopedics and oncology I
was admitted for a week of surgery tests
scans diagnosis and my first round of
chemotherapy I was diagnosed with pelvic
Ewing sarcoma which is a pediatric bone
cancer my tumor was the size of a melon
and it took up my entire hip and went
down into my leg for the next ten months
I lived in the hospital every other week
for many rounds of inpatient chemo and
surgeries for my cancer the chemos
administered over a few days so I would
check into clinic on Monday morning and
then go home Friday night for a week
while I waited for the chemo to kill all
of the fast-growing cells in my body in
between rounds I would be in four
clinics counts blood transfusions and
neutropenic fevers chemo or poison as I
called it was the chemical weapon
doctors had available for my war one
chemo was actually derived from mustard
gas as I lay there in my hospital bed
for my first round of chemo the nurse
came in with what looked like a hazmat
suit with gown gloves and mask
I asked her why she had all that
protective gear on this she put a large
red syringe partially covered in a
garbage bag until one of the pumps on my
IV pole and without looking up from her
work she looked at me and without
looking up she looked at me right she
said because this can’t come into
contact with human skin oh really but
you’re pumping it into my body I thought
that there was something seriously wrong
with this image of pumping toxic
chemicals into a growing child but it
was my best chance for survival
from the start the doctors told me they
would likely need to amputate a quarter
of my body from the hip down on one side
kind of an unimaginable concept for a
ten-year-old or anyone for that matter
but luckily after six rounds of chemo my
tumor had shrunken enough that my
surgeon could save my leg
I had a Hemi pal vechta me to remove my
hip tumor and any other tissue that had
been infiltrated by the cancer I was in
a spike a cast for six weeks and then
it’s like a brace for another eight I
spent the summer between fifth and sixth
grade learning how to walk without a hip
after 14 rounds of chemo I finished my
cancer treatments quite literally
earning a Purple Heart it was awarded to
me by my Hospital through a national
non-profit program for cancer kids
called beads of courage and you get to
add a Purple Heart when you get to the
end of your cancer treatments the bad
news was my post treatment scans were
not clear there were areas of concern on
my femoral head and tailbone
I knew that this cancer was very
aggressive and that if it came back
there were no treatment options so with
my femoral head and tailbone lighting up
my doctors told me that it would be my
last summer and that my family should
pack up and go on our last family
vacation that was nine years ago and
Here I am to have been wrong I’m not out
of the woods yet for Ewing sarcoma the
remission period is ten years which
means I have to wait until I’m 21 I call
myself a survivor there’s also a 50%
remit the 50% recurrence rate and if it
does there’s no
and cure but I’m just one year away when
I was diagnosed I had no idea at the
time
just how big our battalion of soldiers
was I was told
childhood cancer was rare and felt there
weren’t many in our army but at the time
of my diagnosis there were 40,000
children in the United States battling
the same battle for their lives and a
million children worldwide 40,000 other
soldiers fighting alongside me with
16,000 new recruits drafted each year
some were at war for several years this
didn’t just seem rare and insignificant
to me currently in the u.s. one in every
285 kids is diagnosed with cancer and
that incidence rate increases by six
percent every year some of these child
soldiers have no weapons to fight with
when kids and underdeveloped nations are
diagnosed with cancer they are often
sent home to die because they don’t have
access to the treatments we have for
those of us in the United States and
other developed nations we’re the lucky
ones we have treatment facilities drugs
radiation and surgery is available to us
what we have here isn’t enough but at
least we have options so that we can
fight for the chance to grow up
treatment protocols for cancers vary by
each type but in general it takes about
10 months to fight solid tumors and up
to three years for some forms of
leukemia for me I had 14 rounds of
inpatient chemo and some surgeries what
I saw was lots of little bald kids
riding their IV poles down the hallway
or being pulled in red wagons with their
IV poles in tow three of my friends Maya
Tori and Sammy would always bring their
American Girl dolls to the hospital have
playdates in each other’s rooms
we buried Maya in 2014 after her fifth
it was surreal to me to see these little
kids acting as normal as they could all
while enduring brutal chemo regimens
radiation sessions and devastating
surgeries they should have been on the
playground at school or in their own
little beds at night instead of living
in the hospital having two’s of toxic
chemicals pumped into them from beeping
machines a day for me wasn’t too bad
I had Xbox I took it one day at a time
one milestone at a time embraced every
breath as a gift and took every
opportunity that I could to speak out
about childhood cancer and raised
research funds for my hospital
I planned to survive we all did
we had futures ahead of us what really
changed things for me was when I learned
that our soldiers were dying here I was
about nine rounds in in my big blue body
cast and the hospital gets very quiet
after about 8:00 p.m. it’s a Children’s
Hospital after all kids need to sleep
and my mom and I had just finished
Washington a movie was probably 11:30 we
were getting ready for bed and all of a
sudden there was a break in the silence
a crash and a scream and when you’re on
an oncology for those noises really only
Michael was three years old I realized
that night that Michael would never grow
up he would never graduate high school
he would never get married he would
never have children and the worst part
is that no one really knew the world did
not stop to remember Michael it didn’t
make the news
his loss did not cause corporations to
rethink their corporate giving
structures even people on the same
oncology floor it didn’t know Michael
died I had to do something I had learned
about the incidence rates the treatment
protocols and their shortcomings the
funding gap and the truth behind
survivorship rates so I turned to my mom
and I said someone really needs to make
some noise about this and she turned
back and said yeah you’re right
someone really does and after a few more
seconds she realized that I wanted to be
that somebody I laid out my whole plan
for starting a foundation for pediatric
cancer research I wanted to get on the
national talk circuit to educate people
about childhood cancer and how urgent
the cause is I wanted to have headlining
musicians do music benefit concerts for
pediatric cancer research and thankfully
I have the world’s best mom so she
turned back to me and said okay let’s do
it of course I had to finish my own
cancer battle first before I could wage
war against childhood cancer as a whole
so I finished my treatments over the
summer and officially incorporated make
some noise cure kids cancer on September
24 2009 from there we hit the ground
running we had our first fundraiser the
next day a car wash at the local church
with the live band of course and in
January 2010 we had our kickoff gala
raising a hundred and ten thousand
dollars in one night by March we
released our first awareness video
called one in 320 which was the cancer
incidence rate in children at the time
and I outlined my story on behalf of the
children who cannot in an effort to
describe how urgent this cause is in the
next few years we incorporated chapters
in Seattle Denver wasp Boston and
Western New York as well as creating new
fundraisers and campaigns to further the
cause we created the heroes run in which
participants can earn the privilege of
wearing a gold cape to show their
heroism for kids cancer by raising a
hundred dollars on their sponsorship
page we renamed our annual gala noise
night and encouraged people around the
country to host their own noise night
events around the country so that we can
be making the most noise possible a
large portion of our funds come from
grassroots events like school
fundraisers and church collections etc
by the time I was 18 we had raised two
million dollars for pediatric cancer
research then the type of research that
we fund depends on the kind of cancer
because each pediatric cancer is at a
different place in their research
advancement so for tumors that are a
little further behind we fund basic
science which would be like identifying
the gene that triggers the tumor
creating a tumor bank so that
researchers can better understand how it
behaves we try and look for specific
translational research studies for
cancers that are further along we both
look at preclinical and clinical work
what would be things like bypassing the
blood blood-brain barrier for brain
tumors or amino there appeals and other
amazing work like that we try and move
research to the next level so that we
can be saving more lives because that’s
what’s important however with the NIH
budget continuing to shrink researchers
are spending up to 75% of their time
just trying to get the money to do their
research we can’t allow our progress in
research to stagnate or even evaporate
due to a budget issue this is where
foundations like make some noise come in
we bridge the funding gap we make sure
that these researchers have the
resources they need to conduct their
amazing work and that we can save more
lives not only save them but save them
more effectively with less long-term
side effects perhaps my favorite project
would make some noise it’s called the
National Angel quilt the idea was
conceived by my mom during a period
where we had lost four friends in two
weeks driving home from one of the
funerals my mom was desperately
searching for a way to honor these
children and show that they’re not just
numbers on a piece of paper these are
real children that would have grown up
to become doctors teachers musicians
scientists and leaders who knows who
we’ve lost already who will lose
tomorrow or next week so she thought
about the AIDS quilt and how impactful
that was on changing the country’s
perspective on AIDS and came up with the
idea of an organized memory quilt for
childhood cancer victims as it is right
now any childhood cancer victim who has
earned their angel wings
due to their battle is eligible to be on
the quilt and due to HIPAA laws we can’t
find them ourselves of course so we rely
on family members to submit their loved
beyond make some noise the foundation is
a founding member of the coalition
against childhood cancer which is a
coalition of pediatric cancer
foundations that support family support
research advocacy awareness and and
things like that and what we’ve been
able to do through the coalition is work
with many other foundations to create a
first-of-its-kind research conference
where all of the stakeholders in
childhood cancer are brought together
the foundations the researchers
pharmaceutical companies government
regulators typically these conferences
are just the researchers or just
pharmaceutical companies what have you
we brought everyone together for the
first time today we continue our work
with CAC – the coalition and on our own
I won’t stop making noise until these
cures are found I’ve lost too many
friends and I keep losing more but
making noise can be applied to many more
things besides cancer research when
you’re faced with adversity or injustice
it empowers you to be the voice to bear
witness and share it with the world
in post 9/11 New York the New York Metro
Transit Authority came up with the
slogan if you see something say
something this was done in a call to
action plea so that the citizens could
help the police protect the people
cities are huge and there just aren’t
enough police to see everything so they
were relying on laypeople to look for a
suspicious behavior or unattended bags
and things like that and what they were
doing in effect is educating everyone
that their voice can change the world
your voice can save a train load of
passengers your voice can save a local
landmark from demolition help save an
endangered species changed laws just
look at Florida today a few and raged
high school students have been able to
change gun laws in Florida and possibly
change national laws it doesn’t matter
how old you are it doesn’t matter how
young you are an 11 year old can start a
foundation for pediatric cancer research
or some raging grannies can fight for
your social services too often I see
people faced with adversity and they sit
and feel sorry for themselves and I
always ask why if you’re alive active
change can come in any size and its
impact can be profound all you need is
to grab your passion use your brain and
fight with everything you have until
change is made and then keep fighting
thank you and thank you to the
University of Rochester TEDx team for
this amazing event [Applause]
Please follow and like us: