November 6th, 2019 I swallowed my first dose of Trikafta!!!!! I have felt every emotion, some I didn’t even know existed. We have waited almost 40 1/2 years for this moment!  Heres to hoping for a prolonged future, the chance to take a deep breath with ease, and ditching this damn leash... a girl can dream and I am dreaming BIG!!! I have really high hopes for this drug. I am putting every single egg in the basket and really it’s because I don’t have any other choice. I think it’s ok to want big changes and to want them instantly. But in reality I think it will take time and my c ..read more

My first grade teacher always used the phrase “patience is a virtue” she repeatedly said this to the class as a whole and the individuals who needed a good reminder. Even tho I may have been too young to really grasp the concept it’s something that stuck with me throughout my life. ⁣ ⁣ 30 years ago cystic fibrosis made headline news when the CF gene was identified by Dr. Lap-Chee Tsui. This was a HUGE discovery and a very pivotal moment in my life. This breakthrough changed genetic research and led to so many new medical advancements across the board. This was the first glimmer of hop ..read more

I am truly honored to be the 2019 Alex Award recipient, to be honored and recognized for something that I feel like I was born to do is an indescribable feeling. I will remember this weekend for the rest of my life, it truly was so incredible and it meant so much to me! I cannot even begin to put into words or describe everything that I’m feeling. It’s been so overwhelming in the most beautiful, remarkable, inspirational way. Every second was jam packed with so much Love, Hope and inspiration it was so amazing and so powerful! To have my family and friends once again by my side to experie ..read more

Just a reminder Five Feet Apart comes out this Friday, March 15!! Go see it!!  There have been so many different discussions and opinions regarding this movie in the CF community. Whatever feelings you have towards this movie I hope you will at least see it, and when you do I hope it will help alleviate your fears and concerns and you will see how eye opening and well done it truly is.  I have had the opportunity to see this movie twice now, once last month and again this week, both times the audiences were moved to laughter and tears. I thought FFA was incredibly done and very relatable ..read more