Casey turns 25 this April.  He was diagnosed with Cystic Fibrosis at four weeks of age due to failure to thrive.  Through genetic testing we discovered that he has two rare/nonsense CF mutations.  As a result, we realized early on that he would be at the end of a very long line of CF patients waiting for effective treatments and a cure.  In his lifetime, we have seen the development of truly amazing CF drugs called modulators.  These medications are not just adding years to the lives of most CF patients, but decades. This is a direct result of support of the Cystic Fibrosis Foundation that funds critical research and accompanying clinical trials, bringing life changing drugs to reality. 

Unfortunately, Casey is in the 10% of the CF population for whom these modulators are not effective or are not tolerated.  A cure for these patients will likely come in the form of genetic therapy. As a result, the primary focus of the Cystic Fibrosis Foundation is the development of these genetic therapies and bringing them to all CF patients.

Casey leads an active, happy life of a 25 year old, but he is also a remarkable patient. He is diligent with his extensive medications (oral and nebulized) and twice daily pulmonary therapy while also making time to go to the gym or run every day. He does all of this while successfully managing a demanding full time job.  He is determined to stay as healthy as possible until a cure is a reality.  He is an avid golfer and loves to travel. He consistently finds ways to extract more from life each day, and his positive attitude endears him to everyone he meets.  Rarely is he seen without a smile.  

Casey gives us reasons every day to stay in this fight to end CF - and we will keep fighting until it is won.