In Their Own Words: Josh Sommer

Josh Sommer: My name is Josh
Sommer, I'm 22 years old,
and I'm the Executive Director
of the Chordoma Foundation,
trying to find a cure
for a rare form
of cancer called Chordoma.
TEXT: Chordoma is a tumor
that occurs in the head
and spine. In 2006,
I was diagnosed with a chordoma
in the very center
of my head it was pressing
on my brain stem and wrapped
around arteries,
had this tumor removed
and unfortunately found
out that it was chordoma,
which has an average survival
of seven years
and beyond surgery,
not really effective therapies.
In some cases radiation is
effective, but if
that fails really there's no
approved drug
to treat this disease.
And so, my mother
and I basically found those
statistics unacceptable
and started a foundation to try
to change those statistics.
And so the Chordoma Foundation
was really founded as a way
to give researchers the
resources that they needed, tissue,
cell lines, animal models,
to provide them funding that they
needed to do their work,
and to connect researchers,
get them collaborating,
and facilitate the flow
of information and discoveries
between labs in a real time,
rapid manner,
as opposed to over years
and years.
I don't think chordoma is
that unique,
in that there are hundreds
of rare cancers
and they're all facing the
same challenges.
They're all suffering for lack
of cell lines,
they're all suffering for lack
of tissue, they all have fewer
researchers studying them
than ought to be studying them,
they all are suffering for lack
of funding.
And if you think of them all
as separate rare entities,
they're never going
to get the sort of funding
and attention that they deserve.
But when you add them all up,
they actually account
for about 25 percent
of all cancers.
There's a huge opportunity
for replicating a research model
across all these rare cancers,
not reinventing the wheel,
not focusing one off,
but trying to solve some
systemic problems and put
in some systemic solutions
that are going
to benefit all these
rare cancers.
I think there's an incredible
amount that can be translated
from studying rare cancers
to understanding common cancers
as well.
When you first get confronted
with the disease
and you hear a seven-year
average survival,
no effective chemotherapy,
it's really,
it's a really heavy burden.
But if you then break it down
and realize
that the reason there's a seven-
year average survival
and no effective chemotherapy is
because data isn't flowing
between labs
and researchers don't have the
resources that they need,
they don't have the funding that they
need, well all those problems
are solvable.
And if you just kind
of take them one chunk
at a time, and figure
out how all the pieces fit
together then I think it becomes
much more manageable
and much more tractable.
Before I had chordoma and went
through this experience,
my worldview was
somewhat different.
I mean I think you kind of get almost
in a procession
or on a treadmill where you go
to college and you get a job
and then, you know,
you're kind of expected
to do certain things
with your life. And
and really causing systemic
change isn't something
that we necessarily think of as possible
for most people, or especially
for young people,
that are in college or so forth.
But you know when the stakes are
so high, I guess it's made me
reconsider that and realize
that a lot of the problems
that may seem intractable are,
with the right dedication,
with the right group of people,
are actually solvable.