when I was 30 I sat at my parents
kitchen table have a seat with me I
remember saying to my mom my mom and my
dad I don’t know how much longer I want
to be alive and the reason I said those
impossible words to my parents mmm is
because I had just survived cancer for
the second time in my 20s let me take a
growing up my father had an expression
that he repeated to my brother and I
anytime that we doubted ourselves the
difficult we do immediately the
impossible just takes us a little longer
I grew up living my father’s motto that
if I believed in myself impossible
things just took us a little longer and
so in my 20s I thought I had
accomplished a pretty cool impossible
thing I won the New York State natural
bodybuilding title my thank you my
friend Matthew would tell me that I’m
not good enough at Photoshop to make
that up that was more than a title to me
it was my identity it is what I thought
being a man was supposed to look like
after winning I was diagnosed with
testicular cancer and a few years later
I was diagnosed with a different form of
testicular
cancer I remember at that point in my
life being in so much pain that I threw
out and deleted every picture I had of
myself because I couldn’t stand to look
at where I was at that moment in my life
and a little while ago I called up my
brother-in-law Bart
he has three beautiful sons and he’s the
family curator of photos and I said hey
Bart we took a trip together
after I finished radiation therapy and I
remember we took a canoe trip down a
little waterway in Western Michigan and
there’s a picture of me standing on the
side of the river and I look awful
I look just awful and Bart very
diligently opened up his files and
neatly organized and he said Dave I
don’t see this picture of you looking as
awful as you think or you described but
I’m just gonna send all of them to you
remember opening it thinking that
doesn’t in any way capture where I was
at that moment in my life and by looking
at that photo I actually felt like I was
sort of betraying the memory of where I
was because it just didn’t represent
what that experience was like for me the
things that I want to share with you
right now
are actually too embarrassing for me to
say and they’re too painful for me to
think so I’m gonna come back to him in a
minute not long after that I found a
community I met a community of fellow
young adult cancer survivors and
caregivers it changed my life to be
around people who understood what my
experience was like and could relate to
what I was going through in over the
last five years together we have created
the first healthcare company in the
world started and run by the young adult
thank you in addition to being a young
adult cancer survivor I am also a
patient experience researcher experience
in health is different than almost any
other aspect of our life if you think
about the experience of buying your
house first house for example you
probably think about how much you want
to spend what you want it to look like
maybe how close or how far you want to
live from certain people in health our
experience is what happens when life
betrays our expectation in health
experience is what happens when life
betrays what we expected for that reason
I’m very proud to share with you our
company we spell our name with a why
because there is no I in grit it is a
team sport thank you every member of
team grit has a profound story of how
their health or a diagnosis interrupted
what they expected to happen in life one
of the young women with grit is a PhD in
pharmacology and she is also one of the
leading researchers in the world in her
own diagnosis this is pretty cool
together we have spent the last five
years creating a free app for people
around the world to be able to live
their shared experiences to be able to
connect with others in similar
experiences and so at the same time a 31
year old woman who was just diagnosed
with stage 3 APL leukemia is connected
to another 31 year old woman who was
just diagnosed with stage 3 APL leukemia
at the same time a 55 year old man whose
wife is in treatment for stage 2 breast
cancer is connected to another 50
five-year-old man whose wife is in
treatment for stage 2 breast cancer we
call our free app ready for it stupid
cancer thank you and by connecting
people around these shared experiences
there are now people in all 50 states
and across 65 countries who are
connecting with somebody who understands
just what they’re going through thank
you uh a few weeks ago I talked to a
friend that I met on the app and being
able to share with him where I was he
shared with me how he was at the same
dark place that I was after my second
time surviving cancer and the things
that I wasn’t able to tell people that
losing my ability to have biological
children that losing the body parts that
I thought defined what it meant to be a
man and this is the most embarrassing
I’m sorry that losing my ability to
perform sexually made me question if I
was still a man at all and by allowing
us to live in these spaces that are
often too painful to think or to say
we’re allowed to move forward in our
life and actually be a part of what
we’re doing as individuals hmm as a
researcher
this graph shows me a lot of things it
shows me the half-a-million connections
that have happened in the last seven
months on the stupid cancer Adam it
gives me hints about when people are
connecting and at what levels but as a
survivor I see miracles
I see people connecting and sharing
things that maybe elsewhere in their
something happened this year in
healthcare that has changed the future
for all of us for the first time the FDA
has now required a drug company to
submit patient experience data along
with a new application what that means
is that biology is no longer enough our
experience as individuals is a part of
how new treatments will be developed and
approved after surviving cancer for the
second time I was referred to an
endocrinologist to start my hormone
therapy when I walked in the door I
noticed that everybody else in the
waiting room was in their 70s and
through conversations through my
numerous visits talking to people I
realized that most of them are many of
them were there for things like prostate
cancer and I spent a year with a doctor
who treated me the same as everybody
else in his waiting room I don’t blame
him it’s what he knew but my experience
was something very different I will
spend the rest of my life making sure
that as individuals our experience is a
part of our care it is our way to
contribute and it is our way to manage
our care the early evidence shows that
not only is this important to us as
individuals it also improves outcomes it
gives the medical team the ability to
respond to our individual needs and it
gives us the ability to contribute in a
meaningful way we each one of us are the
experts in our care nobody knows our
life better than us as individuals and
my ask to you is to please never lose
track of our humanity it is the real it
is the raw it is the messy and it is the
beautiful part of what makes us who we
are
after spending my life living my
father’s words
the difficult we do immediately the
impossible just takes us a little longer
what I’ve come to learn is that treating
disease can be really difficult but
living can feel sometimes impossible and
I’ll share with you the words that
someone on the platform spoke last month
before she threw out the opening pitch
at the Colorado Rockies game in Denver
Ellis says life isn’t about surviving
it’s about living thank you [Applause]
kitchen table have a seat with me I
remember saying to my mom my mom and my
dad I don’t know how much longer I want
to be alive and the reason I said those
impossible words to my parents mmm is
because I had just survived cancer for
the second time in my 20s let me take a
growing up my father had an expression
that he repeated to my brother and I
anytime that we doubted ourselves the
difficult we do immediately the
impossible just takes us a little longer
I grew up living my father’s motto that
if I believed in myself impossible
things just took us a little longer and
so in my 20s I thought I had
accomplished a pretty cool impossible
thing I won the New York State natural
bodybuilding title my thank you my
friend Matthew would tell me that I’m
not good enough at Photoshop to make
that up that was more than a title to me
it was my identity it is what I thought
being a man was supposed to look like
after winning I was diagnosed with
testicular cancer and a few years later
I was diagnosed with a different form of
testicular
cancer I remember at that point in my
life being in so much pain that I threw
out and deleted every picture I had of
myself because I couldn’t stand to look
at where I was at that moment in my life
and a little while ago I called up my
brother-in-law Bart
he has three beautiful sons and he’s the
family curator of photos and I said hey
Bart we took a trip together
after I finished radiation therapy and I
remember we took a canoe trip down a
little waterway in Western Michigan and
there’s a picture of me standing on the
side of the river and I look awful
I look just awful and Bart very
diligently opened up his files and
neatly organized and he said Dave I
don’t see this picture of you looking as
awful as you think or you described but
I’m just gonna send all of them to you
remember opening it thinking that
doesn’t in any way capture where I was
at that moment in my life and by looking
at that photo I actually felt like I was
sort of betraying the memory of where I
was because it just didn’t represent
what that experience was like for me the
things that I want to share with you
right now
are actually too embarrassing for me to
say and they’re too painful for me to
think so I’m gonna come back to him in a
minute not long after that I found a
community I met a community of fellow
young adult cancer survivors and
caregivers it changed my life to be
around people who understood what my
experience was like and could relate to
what I was going through in over the
last five years together we have created
the first healthcare company in the
world started and run by the young adult
thank you in addition to being a young
adult cancer survivor I am also a
patient experience researcher experience
in health is different than almost any
other aspect of our life if you think
about the experience of buying your
house first house for example you
probably think about how much you want
to spend what you want it to look like
maybe how close or how far you want to
live from certain people in health our
experience is what happens when life
betrays our expectation in health
experience is what happens when life
betrays what we expected for that reason
I’m very proud to share with you our
company we spell our name with a why
because there is no I in grit it is a
team sport thank you every member of
team grit has a profound story of how
their health or a diagnosis interrupted
what they expected to happen in life one
of the young women with grit is a PhD in
pharmacology and she is also one of the
leading researchers in the world in her
own diagnosis this is pretty cool
together we have spent the last five
years creating a free app for people
around the world to be able to live
their shared experiences to be able to
connect with others in similar
experiences and so at the same time a 31
year old woman who was just diagnosed
with stage 3 APL leukemia is connected
to another 31 year old woman who was
just diagnosed with stage 3 APL leukemia
at the same time a 55 year old man whose
wife is in treatment for stage 2 breast
cancer is connected to another 50
five-year-old man whose wife is in
treatment for stage 2 breast cancer we
call our free app ready for it stupid
cancer thank you and by connecting
people around these shared experiences
there are now people in all 50 states
and across 65 countries who are
connecting with somebody who understands
just what they’re going through thank
you uh a few weeks ago I talked to a
friend that I met on the app and being
able to share with him where I was he
shared with me how he was at the same
dark place that I was after my second
time surviving cancer and the things
that I wasn’t able to tell people that
losing my ability to have biological
children that losing the body parts that
I thought defined what it meant to be a
man and this is the most embarrassing
I’m sorry that losing my ability to
perform sexually made me question if I
was still a man at all and by allowing
us to live in these spaces that are
often too painful to think or to say
we’re allowed to move forward in our
life and actually be a part of what
we’re doing as individuals hmm as a
researcher
this graph shows me a lot of things it
shows me the half-a-million connections
that have happened in the last seven
months on the stupid cancer Adam it
gives me hints about when people are
connecting and at what levels but as a
survivor I see miracles
I see people connecting and sharing
things that maybe elsewhere in their
something happened this year in
healthcare that has changed the future
for all of us for the first time the FDA
has now required a drug company to
submit patient experience data along
with a new application what that means
is that biology is no longer enough our
experience as individuals is a part of
how new treatments will be developed and
approved after surviving cancer for the
second time I was referred to an
endocrinologist to start my hormone
therapy when I walked in the door I
noticed that everybody else in the
waiting room was in their 70s and
through conversations through my
numerous visits talking to people I
realized that most of them are many of
them were there for things like prostate
cancer and I spent a year with a doctor
who treated me the same as everybody
else in his waiting room I don’t blame
him it’s what he knew but my experience
was something very different I will
spend the rest of my life making sure
that as individuals our experience is a
part of our care it is our way to
contribute and it is our way to manage
our care the early evidence shows that
not only is this important to us as
individuals it also improves outcomes it
gives the medical team the ability to
respond to our individual needs and it
gives us the ability to contribute in a
meaningful way we each one of us are the
experts in our care nobody knows our
life better than us as individuals and
my ask to you is to please never lose
track of our humanity it is the real it
is the raw it is the messy and it is the
beautiful part of what makes us who we
are
after spending my life living my
father’s words
the difficult we do immediately the
impossible just takes us a little longer
what I’ve come to learn is that treating
disease can be really difficult but
living can feel sometimes impossible and
I’ll share with you the words that
someone on the platform spoke last month
before she threw out the opening pitch
at the Colorado Rockies game in Denver
Ellis says life isn’t about surviving
it’s about living thank you [Applause]
Please follow and like us: