when you're going to come up with
patient-focused regenerative medicine
solutions you have to have the patient
involved I think serms got it right with
regard to the strategic plan in terms of
putting patients and people first how
did you first find out that you had
myelofibrosis well it was about eight
years ago that I was diagnosed and I was
28 and the picture of health I ran every
day I ate healthy didn't smoke I
recycled I am everything I thought you
know it's doing right and I felt this
little bump underneath my rib cage and I
went in and after you know months of
testing trying to figure out you know
what is wrong with you they discovered I
had myelofibrosis well at the time that
you know you all were doing your
research it wasn't there yet for me and
so my doctor said well this is what you
have there's no cure there's no match
for you for a bone marrow transplant and
what we can do is monitor the
progression of your disease and as you
get sicker try to mitigate you know and
manage those side effects I'm 28 like
that's not okay that's not an okay
answer there was no hope I kept asking
well what can I do can I can I eat just
carrot skinny better can I run more can
I run less anything and no you know
there was nothing um so it wasn't until
I met dr. Jamison that someone gave me
the hope you know yes we we can try
something you can work with me on this
research and I've been on this trial for
almost three months and my spleen is
getting smaller I
and this is after you know years of
feeling like I'm trapped in that scene
from alienware this thing is just trying
to jump out of my torso and it would
just hurt constantly and that was my
future this perpetual pain and this
exhaustion from this disease like I was
constantly stuck on the top of a
mountain where there just wasn't enough
air and I couldn't acclimate I you know
my friends would go out at night and
they would be able to stay out past
eight o'clock but I couldn't and I felt
exhausted constantly and and now I have
energy I'm getting married in in March
yes my fiance and i plan on staying out
all night um so yeah this has just been
the most amazing experience for me and
I'm so grateful well we're grateful for
you Sondra what do you hope for the
future what do you think we can do to
make things even better in terms of your
treatment or you know any kind of test
we bring forward well the you're kind of
doing the thing that I really need which
is this collaboration this ability to be
a part of what you're you know this
research because I know that there's no
perfect answer yet but eight years ago
there was no answer at all so I'm hoping
eight years from now you know that would
be that answer and you know you've also
forced me to start saving for retirement
nobody's retiring here is no so biology
is going to work all right well thank
you so much sounder really appreciate
you can pass through March seventeenth
in Costa Rica and cuz