December 2019

Peter Parker once said being Spider-Man is both a blessing and a curse and that’s what it’s like to be so regimented in regards to… Read More »2019 – My Year in Numbers

Some people have to go see a movie or read a comic book to witness a superhero. All I have to do is drive up… Read More »My Fellow Warrior – Nana

For 16,846 days, I’ve wondered if I would die without ever having taken a deep breath. The day Trikafta was approved, Andrea happened to be passing… Read More »Deep Breaths- Day 30 on Trikafta

With Trikafta, the miracle CF drug, now available to som many individuals with cystic fibrosis in the US. I’ve noticed some distinct commonalities with people… Read More »9 Ways to know if someone is on Trikafta

Spreading hope to others with cystic fibrosis is so important to me and why I started the CF Warrior Project. Growing up with cystic fibrosis,… Read More »The Importance of Hope – life with cystic fibrosis

Dear Wendy,  Today we would have celebrated your 49th birthday. That’s crazy, right? I wanted to tell you about my year as I do every year… Read More »To Wendy on her 49th birthday.

The FDA approved Trikafta, the CFTR modulator, on Monday, October 21, 2019. Coincidentally I found myself on The Today Show that day discussing what a… Read More »First Month on Trikafta

My name is William. I’m 27 years old and from the Garden State, New Jersey. When I was born, the doctor’s realized something was wrong… Read More »Only 7 Like Me- A CF Warrior Story

On Friday I went ahead and did my pulmonary function test (PFT). I was hoping to get a few percentage points higher and get excited… Read More »You Will Not Believe my PFT Results!

It has been 40 days since the words “Trikafta has been FDA approved.” This is a drug I’ve waited approximately 46 years and 2 months… Read More »My First Week on Trikafta