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 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.
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.
Medical Experts From 46 Countries to Collaborate at World's Largest Forum on CF Research and Care for Life-Threatening Genetic Disease
The COVID-19 pandemic brought great challenges to cystic fibrosis care. As Michelle Prickett showed during plenary 1 of this year's North American Cystic Fibrosis Conference, CF care teams adapted to provide care and keep us safe. It also shows where CF care may be headed in the future.
After watching the second plenary of the 2021 North American Cystic Fibrosis Conference, I was incredibly impressed by the level of support the Cystic Fibrosis Foundation is providing to the development of the next generation of therapeutics. Developing genetic therapies -- especially those as complex as gene editing -- will take a long time and a lot of collaboration.
I was pleased to see that the third plenary session at the North American Cystic Fibrosis Conference included patient stories that reflected the diverse experiences of those with cystic fibrosis. I also like that it focused on the need for bold action to help those who can't benefit from modulators and centered on the full ecology of treatment innovations that can benefit every person with CF.
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.
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.