The Cystic Fibrosis Foundation has launched a new program that will fund 60 additional research coordinators to help speed the progress of CF clinical trials throughout its Therapeutics Development Network (TDN).
Site Search
This morning, Vertex Pharmaceuticals announced the results from the Phase 3 clinical trials of ivacaftor (Kalydeco™) and lumacaftor (VX-809) in people with two copies of the F508del mutation.
Last year -- just one week before my 12th birthday -- my doctor reached out to my family and asked me if I wanted to enroll in a clinical trial. Here's why I decided to say yes.
As a frequent public speaker, I was surprisingly nervous the day before I spoke to my kids' classmates about the realities of cystic fibrosis several years ago. Luckily, my kids knew just what to say to calm my nerves.
About a year and a half ago, I started preparing for three students with cystic fibrosis at the school where I work as a school nurse. Here's an update on how things have been going.
Sending your child to kindergarten for the first time is hard enough, but when your child has cystic fibrosis, it is even harder. Here's how I handled my daughter's transition to kindergarten and the lessons I learned along the way.
Back in 2015, my genetic sequencing revealed one nonsense mutation. But recently, I learned I have another nonsense mutation that may not have been identified when my genes were first sequenced. As more mutation-dependent therapies are developed, it’s crucial that people with CF have accurate information so they can make informed decisions.
For those of us who can’t take modulators, it can sometimes feel like you’ve been left behind. But I have found hope and motivation by participating in clinical trials.