The CF Community Blog is written by the community, for the community. It's about sharing our experiences, reflections, and perspectives — the good days, the bad days, and all the tough and wonderful things in between. With topics ranging from emotional health to treatments, the blog is a platform to share your unique story.
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.
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As someone who has fought to have my mental health struggles acknowledged in the past, I was heartened that the third plenary at this year’s North American Cystic Fibrosis Conference focused on the integration of mental health into CF care and research, as well as the mental health well-being of CF care teams.
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The second plenary at this year’s North American Cystic Fibrosis Conference focused on infections, how they are evolving as CF evolves, and how many people with CF still struggle with infections despite modulators. As a person with CF, the evolution of infection research has accelerated progress in my own life.
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I felt unrelenting hope watching the first plenary of this year’s North American Cystic Fibrosis Conference. As I learned about progress that has been made in sickle cell disease, and how those learnings may help us develop a genetic therapy for CF, it showed me that the CF community is supporting people like me who can’t take modulators.
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The third plenary at this year’s North American Cystic Fibrosis Conference focused on the changing needs of the CF population that are compelling an evolution in CF care. As a person with CF, this evolution in care directly affects me as I face the challenges of living longer with this disease.
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While I’ve had the incredible opportunity to participate in clinical trials for cystic fibrosis, my nonsense mutations mean I can’t benefit from modulators. I was inspired by the North American Cystic Fibrosis Conference’s second plenary session, which discussed how we can evolve clinical trials to develop treatments for all people with CF.
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As someone who does not qualify for Trikafta®, I took particular interest in the first plenary of the North American Cystic Fibrosis Conference, which discussed potential treatments for people with nonsense and rare mutations. I learned that researchers are exploring a variety of options, and some early research has shown promising results.