A Note from the Chairman
It is a sad day for the entire JM community to learn of Mason Smedley's passing given his couregeous battle against Juvenile Myositis. Mason was only ten years old and lived in the Portland area.
Mason was recognized as a Cure JM Hero at our Cure JM national conference in Carlsbad, CA in 2009. Mason was so brave and an inspiration to many -- his big smiles and sense of humor will never to be forgotten by those who have met him! His family (amazing parents and an incredible support network of friends) have been working tirelessly helping Cure JM raise awareness of this disease every chance they could get, including organizing an annual benefit concert for Cure JM. (Their next Cure JM concert is scheduled for Sunday, August 19th at Hillsboro Stadium).
Please click here for a touching tribute video of Mason created by his family. The song for the video was written by Jessica Lerner. Jessica first met Mason back in 2009 when he was hospitalized in the San Diego Children's hospital (the Smedley family was on vacation when Mason had major health complications). Mason's Dad (and Mason's sister) coincidently met Jessica while she was performing her music in a mall (she sings and plays her own music). She was singing a song called "Miracle" and it really touched Mason's Dad and sister given Mason was in the ICU and not doing well at all. They introduced themselves to Jessica. Jessica was so touched by Mason's story, she started regularly visiting Mason in the hospital and would bring her guitar to sing to him. After several months, Mason was finally well enough to be flown home.
Since that chance meeting, Jessica has traveled from San Diego to Hillsboro to perform at the annual Cure JM benefit concert, she specially wrote the song "Hey Mason" for him and she continues to be a close friend to the entire Smedley and Cure JM family.
Mason, while you are no longer with us, you will forever be a Cure JM Hero! You give us more inspiration to do everything we can to Cure JM! You are loved by so many -- more than you will ever know. Thank you for being part of our lives.
PLEASE consider getting more involved with Cure JM so we can increase the awareness of this orphan disease, get better treatment options and a CURE! Our organization is run by volunteers -- so we can always use help. Get involved -- for Mason and for all our JM kids!
Chairman, Cure JM Foundation