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.
Having an atypical presentation of CF means I stand somewhere between the CF world and the rest of the world — and that makes me feel like I belong in neither.
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This year, theratyping, the process of matching medications with mutations, enabled more people with cystic fibrosis who have rare mutations to benefit from modulators. In the first plenary at the NACFC, we heard more about how theratyping will be used, as well as other future advances coming in CF treatment.
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The Cystic Fibrosis Foundation is funding research into gene editing techniques to see if they can be used to fix the mutations that cause cystic fibrosis. One of the most popular techniques is CRISPR-Cas9. To see how this might work for CF, watch this video.
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Ever wonder about an aspect of cystic fibrosis that you would love someone to research? Find out how you can submit a question in our first community-driven research project.
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In the third plenary, Dr. Wayne Morgan talked about the connection between cystic fibrosis care and the Patient Registry, and introduced a new way for people with CF, along with their families, to help shape the research conducted using the Registry.
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There was a clear message in today's second plenary at NACFC: no matter what role you play -- physician, scientist, person living with CF, parent, fundraiser, regulator -- it is going to take a tremendous team effort to advance new therapies as fast as possible and eventually find a cure for CF.
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Researchers are exploring treatments that will keep people with cystic fibrosis as healthy as possible until a cure is found. In the first plenary at the NACFC, two CF scientists explain the progress of current research.