I hope one day to be as strong as a little girl not just any girl
little girl not just any girl
little girl not just any girl but this one this is 10 year old Emily
but this one this is 10 year old Emily
but this one this is 10 year old Emily Gibson and in a minute you’ll see why
Gibson and in a minute you’ll see why
Gibson and in a minute you’ll see why she’s one of the strongest bravest
she’s one of the strongest bravest
she’s one of the strongest bravest people you could ever meet but first I
people you could ever meet but first I
people you could ever meet but first I have to explain how I ended up in here
have to explain how I ended up in here
have to explain how I ended up in here today see this speech was originally to
today see this speech was originally to
today see this speech was originally to be done by Emily’s dad Trey Gipson long
be done by Emily’s dad Trey Gipson long
be done by Emily’s dad Trey Gipson long long ago a little over 10 years ago Trey
long ago a little over 10 years ago Trey
long ago a little over 10 years ago Trey asked and I’d be one of Emily’s two
asked and I’d be one of Emily’s two
asked and I’d be one of Emily’s two Godfather’s see like most dads he wanted
Godfather’s see like most dads he wanted
Godfather’s see like most dads he wanted his little girl to grow up smart and
his little girl to grow up smart and
his little girl to grow up smart and strong-willed and not to date until she
strong-willed and not to date until she
strong-willed and not to date until she was over 30 so he figured mom could take
was over 30 so he figured mom could take
was over 30 so he figured mom could take care of the first two in between himself
care of the first two in between himself
care of the first two in between himself Emily’s older brother Alex and a couple
Emily’s older brother Alex and a couple
Emily’s older brother Alex and a couple of Godfather’s well we could fend off
of Godfather’s well we could fend off
of Godfather’s well we could fend off the boys a few weeks ago the family got
the boys a few weeks ago the family got
the boys a few weeks ago the family got word that Emily’s battle would be moving
word that Emily’s battle would be moving
word that Emily’s battle would be moving to a new front I guess what she has
to a new front I guess what she has
to a new front I guess what she has termed daf tumor and with that change in
termed daf tumor and with that change in
termed daf tumor and with that change in battle plans Trey was going to be unable
battle plans Trey was going to be unable
battle plans Trey was going to be unable to make it today so he asked that I fill
to make it today so he asked that I fill
to make it today so he asked that I fill in let’s talk about what Darth tumor is
in let’s talk about what Darth tumor is
in let’s talk about what Darth tumor is diffuse intrinsic pontine glioma or DIPG
diffuse intrinsic pontine glioma or DIPG
diffuse intrinsic pontine glioma or DIPG for short during the summer of 2016
for short during the summer of 2016
for short during the summer of 2016 Emily began to experience headaches when
Emily began to experience headaches when
Emily began to experience headaches when she did flip turns as a swimmer the
she did flip turns as a swimmer the
she did flip turns as a swimmer the family went to their pediatrician
family went to their pediatrician
family went to their pediatrician expecting news of a virus but soon found
expecting news of a virus but soon found
expecting news of a virus but soon found themselves visiting a neurologist or an
themselves visiting a neurologist or an
themselves visiting a neurologist or an MRI was ordered a mass was discovered
MRI was ordered a mass was discovered
MRI was ordered a mass was discovered and she was immediately biopsied and
and she was immediately biopsied and
and she was immediately biopsied and thence into st. Jude for six weeks of
thence into st. Jude for six weeks of
thence into st. Jude for six weeks of treatment after leaving the radiation
treatment after leaving the radiation
treatment after leaving the radiation treatment at st. Jude emily qualified
treatment at st. Jude emily qualified
treatment at st. Jude emily qualified for a Phase one clinical trial in San
for a Phase one clinical trial in San
for a Phase one clinical trial in San Francisco until recently traveling there
Francisco until recently traveling there
Francisco until recently traveling there every three weeks for treatment DIPG is
every three weeks for treatment DIPG is
every three weeks for treatment DIPG is a specific type of tumor that represents
a specific type of tumor that represents
a specific type of tumor that represents 10 to 20% of childhood brain tumors it’s
10 to 20% of childhood brain tumors it’s
10 to 20% of childhood brain tumors it’s a highly aggressive
a highly aggressive
a highly aggressive that occurs at the brain stem and this
that occurs at the brain stem and this
that occurs at the brain stem and this Sith is vengeful it impacts the heart
Sith is vengeful it impacts the heart
Sith is vengeful it impacts the heart rate and the nerves and the muscles that
rate and the nerves and the muscles that
rate and the nerves and the muscles that help us to see here walk talk and eat
help us to see here walk talk and eat
help us to see here walk talk and eat essentially shutting down motor function
essentially shutting down motor function
essentially shutting down motor function median survival is only nine months post
median survival is only nine months post
median survival is only nine months post diagnosis with barely ten percent
diagnosis with barely ten percent
diagnosis with barely ten percent surviving two years post diagnosis
surviving two years post diagnosis
surviving two years post diagnosis families are often told to go home and
families are often told to go home and
families are often told to go home and make memories that’s enough to break
make memories that’s enough to break
make memories that’s enough to break many people but not the Gibson family
many people but not the Gibson family
many people but not the Gibson family they’ve chosen to adopt a line from han
they’ve chosen to adopt a line from han
they’ve chosen to adopt a line from han Solo and the Empire Strikes Back never
Solo and the Empire Strikes Back never
Solo and the Empire Strikes Back never tell us the odds and Emily she’s
tell us the odds and Emily she’s
tell us the odds and Emily she’s maintained a commitment to just keep
maintained a commitment to just keep
maintained a commitment to just keep swimming and golfing and taking up
swimming and golfing and taking up
swimming and golfing and taking up softball and a host of other endeavors
softball and a host of other endeavors
softball and a host of other endeavors so now it’s time that we address the
so now it’s time that we address the
so now it’s time that we address the penguin in the room early on it st. Jude
penguin in the room early on it st. Jude
penguin in the room early on it st. Jude Emily decreed that everyone must smile
Emily decreed that everyone must smile
Emily decreed that everyone must smile in her hospital room and that decree
in her hospital room and that decree
in her hospital room and that decree evolved in part to the silly hats chosen
evolved in part to the silly hats chosen
evolved in part to the silly hats chosen by Emily not just for herself but for
by Emily not just for herself but for
by Emily not just for herself but for her team is even as stressful times
her team is even as stressful times
her team is even as stressful times Emily reminds us that it’s okay to just
Emily reminds us that it’s okay to just
Emily reminds us that it’s okay to just keep smiling after all there is a new
keep smiling after all there is a new
keep smiling after all there is a new hope until recently DIPG biopsies
hope until recently DIPG biopsies
hope until recently DIPG biopsies weren’t even performed because of the
weren’t even performed because of the
weren’t even performed because of the fears of the dangers associated with the
fears of the dangers associated with the
fears of the dangers associated with the procedure now new developments like
procedure now new developments like
procedure now new developments like convection enhanced delivery and
convection enhanced delivery and
convection enhanced delivery and immunotherapies are being tried may 17th
immunotherapies are being tried may 17th
immunotherapies are being tried may 17th has been chosen as DIPG Awareness Day
has been chosen as DIPG Awareness Day
has been chosen as DIPG Awareness Day and this year twenty states observe the
and this year twenty states observe the
and this year twenty states observe the day however there’s still a long way to
day however there’s still a long way to
day however there’s still a long way to go everything at present are in Phase
go everything at present are in Phase
go everything at present are in Phase one clinical trials
one clinical trials
one clinical trials what’s a Phase one clinical trial asked
what’s a Phase one clinical trial asked
what’s a Phase one clinical trial asked most DIPG parents and they’ll tell you
most DIPG parents and they’ll tell you
most DIPG parents and they’ll tell you it’s when your child is
it’s when your child is
it’s when your child is essentially a guinea pig but you’re
essentially a guinea pig but you’re
essentially a guinea pig but you’re thankful for the hope of that option
thankful for the hope of that option
thankful for the hope of that option much more monies needed for research not
much more monies needed for research not
much more monies needed for research not just of DIPG but of all childhood
just of DIPG but of all childhood
just of DIPG but of all childhood cancers the coalition against childhood
cancers the coalition against childhood
cancers the coalition against childhood cancer notes that one and two hundred
cancer notes that one and two hundred
cancer notes that one and two hundred and eighty five children will be
and eighty five children will be
and eighty five children will be diagnosed with cancer and that cancer is
diagnosed with cancer and that cancer is
diagnosed with cancer and that cancer is the number one cause of death by disease
the number one cause of death by disease
the number one cause of death by disease amongst children in 80% of kids cancers
amongst children in 80% of kids cancers
amongst children in 80% of kids cancers already spread to other parts of the
already spread to other parts of the
already spread to other parts of the body before it’s ever diagnosed while
body before it’s ever diagnosed while
body before it’s ever diagnosed while progress in the war on cancer has been
progress in the war on cancer has been
progress in the war on cancer has been made
made
made childhood cancer has lagged behind since
childhood cancer has lagged behind since
childhood cancer has lagged behind since 1980 while hundreds of drugs have been
1980 while hundreds of drugs have been
1980 while hundreds of drugs have been approved for battling cancer in adults
approved for battling cancer in adults
approved for battling cancer in adults only three have been approved for use in
only three have been approved for use in
only three have been approved for use in children and five for both adults and
children and five for both adults and
children and five for both adults and children
children
children in other words childhood cancer today is
in other words childhood cancer today is
in other words childhood cancer today is being battled with nearly the same
being battled with nearly the same
being battled with nearly the same medical regimen that was available 40
medical regimen that was available 40
medical regimen that was available 40 years ago we can do better why the
years ago we can do better why the
years ago we can do better why the primary federal funding for cancer
primary federal funding for cancer
primary federal funding for cancer research comes through the National
research comes through the National
research comes through the National Cancer Institute but only 4% of funds
Cancer Institute but only 4% of funds
Cancer Institute but only 4% of funds are dedicated to researching childhood
are dedicated to researching childhood
are dedicated to researching childhood cancer to stick with our Star Wars
cancer to stick with our Star Wars
cancer to stick with our Star Wars metaphor if the entire funding
metaphor if the entire funding
metaphor if the entire funding represents the Empire four percent
represents the Empire four percent
represents the Empire four percent that’s the rebel Union and that’s the
that’s the rebel Union and that’s the
that’s the rebel Union and that’s the most important part for 2015 this means
most important part for 2015 this means
most important part for 2015 this means of the four point nine billion dollars
of the four point nine billion dollars
of the four point nine billion dollars allocated at cancer research 198 million
allocated at cancer research 198 million
allocated at cancer research 198 million dollars was allocated to childhood
dollars was allocated to childhood
dollars was allocated to childhood cancer DIPG perhaps the biggest and the
cancer DIPG perhaps the biggest and the
cancer DIPG perhaps the biggest and the baddest of the childhood cancers
baddest of the childhood cancers
baddest of the childhood cancers received roughly two million dollars for
received roughly two million dollars for
received roughly two million dollars for research why the disparity well yes it’s
research why the disparity well yes it’s
research why the disparity well yes it’s true many more adults get cancer than
true many more adults get cancer than
true many more adults get cancer than children however when an adult gets
children however when an adult gets
children however when an adult gets cancer and an adult dies from cancer
cancer and an adult dies from cancer
cancer and an adult dies from cancer that average number of years of life
that average number of years of life
that average number of years of life lost
lost
lost r16 when a child dies from cancer the
r16 when a child dies from cancer the
r16 when a child dies from cancer the average number of years of life lost are
average number of years of life lost are
average number of years of life lost are 67 while both are tragic there’s a
67 while both are tragic there’s a
67 while both are tragic there’s a unique multiplier effect here further
unique multiplier effect here further
unique multiplier effect here further the National Cancer Institute notes that
the National Cancer Institute notes that
the National Cancer Institute notes that much of what we know about treating
much of what we know about treating
much of what we know about treating adulthood cancers today originated from
adulthood cancers today originated from
adulthood cancers today originated from childhood cancer research so the very
childhood cancer research so the very
childhood cancer research so the very cures that we are seeking may be best
cures that we are seeking may be best
cures that we are seeking may be best found by further researching childhood
found by further researching childhood
found by further researching childhood cancer so what can we do join the
cancer so what can we do join the
cancer so what can we do join the rebellion a child is worth more than
rebellion a child is worth more than
rebellion a child is worth more than four percent I’m not advocating against
four percent I’m not advocating against
four percent I’m not advocating against funding for other forms of cancer
funding for other forms of cancer
funding for other forms of cancer research this is a noble pursuit but if
research this is a noble pursuit but if
research this is a noble pursuit but if it’s a zero-sum game then a greater
it’s a zero-sum game then a greater
it’s a zero-sum game then a greater share should be allocated to childhood
share should be allocated to childhood
share should be allocated to childhood cancer because a child is worth more
cancer because a child is worth more
cancer because a child is worth more than four percent if you’re able to vote
than four percent if you’re able to vote
than four percent if you’re able to vote tell your elected officials that you
tell your elected officials that you
tell your elected officials that you believe a child’s worth more than four
believe a child’s worth more than four
believe a child’s worth more than four percent tell your friends your relatives
percent tell your friends your relatives
percent tell your friends your relatives and anyone who will listen to do the
and anyone who will listen to do the
and anyone who will listen to do the same if you’re able to support cancer
same if you’re able to support cancer
same if you’re able to support cancer research tell those institutions that
research tell those institutions that
research tell those institutions that you believe a child’s worth more than
you believe a child’s worth more than
you believe a child’s worth more than four percent if you’re watching online
four percent if you’re watching online
four percent if you’re watching online open another tab and search for a group
open another tab and search for a group
open another tab and search for a group like the coalition against childhood
like the coalition against childhood
like the coalition against childhood cancer or on Facebook search DIPG kids
cancer or on Facebook search DIPG kids
cancer or on Facebook search DIPG kids find the additional ways that you can
find the additional ways that you can
find the additional ways that you can help and find the ways to increase your
help and find the ways to increase your
help and find the ways to increase your voice and the number of voices that are
voice and the number of voices that are
voice and the number of voices that are advocating that a child is worth more
advocating that a child is worth more
advocating that a child is worth more than four percent join the fight
than four percent join the fight
than four percent join the fight Emmeline she’s taking the fight to Darth
Emmeline she’s taking the fight to Darth
Emmeline she’s taking the fight to Darth tumor she recently returned from San
tumor she recently returned from San
tumor she recently returned from San Francisco after having a second biopsy
Francisco after having a second biopsy
Francisco after having a second biopsy completed and is set to begin a second
completed and is set to begin a second
completed and is set to begin a second round of radiation now we can follow her
round of radiation now we can follow her
round of radiation now we can follow her lead as Yoda said do or do not there is
lead as Yoda said do or do not there is
lead as Yoda said do or do not there is no try
no try
no try join the rebellion and together we can
join the rebellion and together we can
join the rebellion and together we can work to ensure that no child will have
work to ensure that no child will have
work to ensure that no child will have to face this fight again
to face this fight again
to face this fight again and no parent will have to hear this
and no parent will have to hear this
and no parent will have to hear this diagnosis maybe we all can be as strong
diagnosis maybe we all can be as strong
diagnosis maybe we all can be as strong as a ten year old girl maybe we all can
as a ten year old girl maybe we all can
as a ten year old girl maybe we all can be as strong as Emily
”
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