Learning to help my wife access her port is part of our shared journey with CF. Check out our video for some tips and tricks we’ve learned along the way.
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CF Foundation's $1 Million Investment Helped Drug Known as Cayston® Become a Reality
I struggled emotionally after learning that after negative carrier and newborn screens, my son had cystic fibrosis. I’m now advocating for people with rare mutations.
My son, who is Black, has cystic fibrosis. It seems like just a normal fact of life, but I have become frustrated with having to convince doctors that he really does have CF. I hope that one day people of color won’t have to have the same experience.
Proposed legislation has the potential to revitalize the global marketplace for novel antibiotics, bringing urgently needed medicines for drug-resistant infections to patients.
Today, the Cystic Fibrosis Foundation announced it has awarded up to $3.3 million to Polyphor AG to develop an inhaled version of murepavadin, an antibiotic that targets multi-drug resistant Pseudomonas aeruginosa infections in people with cystic fibrosis. About 17% of individuals with CF who had Pseudomonas infections last year had multi-drug resistant strains.
I felt so alone as a kid being gay and having CF — there weren’t any role models in the 80s and 90s that I could look up to. Eventually, I found people who understood what I was going through and that helped me feel good about who I was, and who I am today.
Even though I haven't cultured for nontuberculous mycobacteria, I was excited to learn more about the treatment for the bacteria in people with cystic fibrosis during the virtual session at the North American Cystic Fibrosis Conference.
After years of being treated as an oddity, I want people to acknowledge that I am a Black girl with cystic fibrosis. I want my voice to be heard.