I am 14 years old and have cystic fibrosis. I lost the middle lobe of my right lung last year to a CF related infection and am now in those critical teenage years when CF does its greatest damage. I am riding the Courage Classic to encourage others with CF to do everything that they can to keep their lungs healthy while Dr. Accurso finishes his work and to show that we can, even with diminished lung capacity do things like ride 133 miles on a bike, play competitive hockey, ski a double black diamond bump run or snowboard a halfpipe.
I am alive today because of Children's Hospital and Dr. Accurso, who is the top researcher in the world for CF. Last year, Dr. Accurso received FDA approval for Kalydeco, a drug that dramatically extends the life for 5% of all CF patients (unfortunately, not me). He is currently doing clinical trials for two new drugs that will work for me and needs additional funds to complete that work.