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CF Community Blog

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.

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Caroline Mageau Starnes and a man white water rafting.


Exploring Treatments for People With Nonsense and Rare Mutations

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.

Caroline Starnes
Nov. 3, 2022 | 5 min read
Art Brace and Carmen in Italy


Expanding the Scientific Frontier to the Next Generation of Therapies

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.

Art Brace Headshot
Nov. 4, 2021 | 7 min read
Jennifer Gell Family Watching NACFC Online


How CF Care Adapted to Meet the Challenges Posed by COVID-19

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.

Jennifer Gell Headshot
Nov. 3, 2021 | 6 min read


How My Drug-Resistant Infection Led Me to Help Steer Infection Research

My experience surviving a life-threatening infection led to my role as the CF community co-chair of the Cystic Fibrosis Foundation's Infection Research Initiative. Having a room full of leading scientists listen to my story helped renew my faith that we can tackle the complex challenge of difficult-to-treat infections.

Oct. 28, 2019 | 4 min read


Find Out What Therapies We Are Researching for People With Rare and Nonsense Mutations

Although 90-95 percent of people with cystic fibrosis are expected to benefit from CF transmembrane regulator (CFTR) modulators, 5 percent of the population will still need alternative therapies to address the underlying cause of their disease. Learn more about the research that the Cystic Fibrosis Foundation is doing to find treatments for the 5 percent of people with these rare and nonsense mutations.

Dec. 5, 2017 | 5 min read


Understanding the Science of CF Gives Me a Sense of Control

As both a researcher and a person with cystic fibrosis, it is an amazing experience to watch cells with rare CF mutations respond to drugs in the lab. Knowing the scientific basis for my treatments not only gives me a sense of control, but it encourages me to do my treatments.

Nov. 29, 2017 | 4 min read