Since Cystic Fibrosis Foundation Compass launched last year, we've learned so much from the community and have helped people with cystic fibrosis find creative solutions for all kinds of problems. That's why we are excited to unveil our new “Ask a Case Manager” blog series.
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My son, Arjun, has had the deck stacked against him in some ways. He was born early, with cystic fibrosis, and needed surgery. His resilience, and my hopes for his future, keep me inspired.
Participating in the RARE study gave me an opportunity to play a role in finding a therapy that one day could help me and other people with CF who have two nonsense mutations.
Participating in clinical trials can be scary, but the sense of empowerment you get from knowing that you are contributing to a cure outweighs any second thoughts.
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.
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.
There are two main types of clinical studies in CF research. Both are important to move research forward and provide the best outcomes for people with CF.
The Cystic Fibrosis Foundation, alongside the CF community, urges Congress to pass the PASTEUR Act and the HELP Copays Act.
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.
Scientists around the world agree that global innovation is needed to address the shortage of effective antibiotics. Our Infection Research Initiative supports much-needed research and development, but new policies are needed to promote a sustainable, robust antibiotics pipeline and a marketplace that rewards innovation.