spent the weekend in philly
with some amazing families
all living with desmoid tumors
informative and emotional

i listened to 5 top doctors
deliver TED type talks
about their lifes passion
desmoid tumor research

these r smart peeps
they spoke to hundreds of patients
they brought their own slides
they worked the laser pointer

they answered questions
from worried mothers
from 20 years survivors
some with missing limbs

a community built around a rare disease
3 in a million
gathered together in hope of a cure
a connection

i met a beautiful young couple
whose 2 yr old blonde boy max
has a desmoid in his jaw
i wished for a magic wand

thank u to all who donated money
lots was raised for research
so one day
they will have a way to deal with
demon desmoids

on thursday i will be on the dr oz show
talking about my heart attack
tune in
let me know what u think

peace peeps