Rejoicing today! ... the most significant day in the history of CF research for a cure since the day the CF gene was discovered in 1989. Spectacular news released today that represents the first step to making Cystic Fibrosis a disease that you can live with, but not die from... the first step to securing real hope for a long and healthy life for my 2 girls. Final results on Phase III clinical trials for Vertex VX-770 - the first drug of its kind to treat the basic defect of CF. The "proof of concept" that this news represents increases the hope and excitement for a second Vertex drug (VX-809 in Phase II trials) - if this next drug produces positive results, it will be step 2 and a potential grand slam in a 2-step formula to change the future for ALL with CF. A day full of happy tears and laughter- and much hope!!




HI.  MOONWORM, PENNY PRETTYWORM, BOOKWORM  AND I  WOULD LIKE TO INTRODUCE YOU TO OUR FRIENDS, RACHEL AND HER SISTER MEGAN.

FROM THE MOMENT RACHEL ROLLS OUT OF BED IN THE MORNING UNTIL SHE CAN FINALLY FALL ASLEEP AT NIGHT, SHE HAS ENDURED MUCH MORE THAN ANY 14 YEAR OLD SHOULD.

SHE HAS TAKEN 30 OR MORE PILLS DURING THE DAY JUST TO BE ABLE TO GROW AND FUNCTION.

 IN ADDITION, SHE HAS TAKEN 8 DAILY MEDICATIONS DESIGNED TO SLOW LIVER AND LUNG DISEASE PROGRESSION.

SHE PUTS UP WITH NEEDLES, HOSPITAL VISITS, AND MORE TESTS IN ADDITION TO SPENDING OVER 4 HOURS EVERY SINGLE DAY ON CHEST PHYSIOTHERAPY AND THERAPEUTIC BREATHING TREATMENTS, ALL WITHOUT COMPLAINT.

RACHEL AND HER SISTER HAVE CYSTIC FIBROSIS, THE NUMBER ONE FATAL GENETIC DISEASE IN AMERICA.

SINCE 1955 THE CYSTIC FIBROSIS FOUNDATION HAS BEEN THE DRIVING FORCE BEHIND THE PURSUIT OF A CURE.  THANKS TO THE DEDICATION AND FINANCIAL SUPPORT OF PATIENTS, FAMILIES, FRIENDS, VOLUNTEERS AND CLINICIANS TO NAME A FEW, NEW HOPE IS ON THE HORIZON THAT COULD POTENTIALLY SAVE THE LIVES OF RACHEL AND MEGAN AND THOUSANDS OF CHILDREN JUST LIKE THEM.

BUT THERE IS MUCH MORE TO BE DONE.

PLEASE CLICK HERE TO DONATE TO CYSTIC FIBROSIS.  WE ALL THANK YOU

PLEASE CLICK HERE TO LEARN MORE ABOUT RACHEL AND MEGAN