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.
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Many people have asked me why I would want to climb the highest mountain in Africa with no climbing experience. The answer is simple: an undeniable love for my daughter, Jennifer, and a determination to raise money for all those living with cystic fibrosis.
Two 2017 Volunteer Leadership Conference attendees, one a veteran attendee and another a newcomer, reflect on their experiences in Dallas, Texas.
The initial sadness we felt when learning that our son had cystic fibrosis quickly gave way to our determination -- as a family -- to react in a productive 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.