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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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Katherine-Tuggle-NACFC-P1-Clancy

BLOG

The Future of Personalized Medicine

There's a lot of buzz around personalized medicine, but what does it really mean? In the first plenary at NACFC, John P. Clancy, M.D., outlined the history of personalized medicine, where we are now and what the future holds. Read on for a quick recap.

Katherine-Tuggle-Headshot
| 4 min read
Rebecca-Schroeder-dinner-NACFC-2012

BLOG

Grateful Space

As the mother of a child with CF and volunteer for the CF Foundation, I know first-hand the extraordinary things that Dr. Bob Beall has done for our community, and I am grateful for the legacy of hope that he leaves behind. 

Rebecca-Schroeder-Headshot
| 4 min read
Amy-Braid-Wedding

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Orkambi: A Life Sentence

I've lived my whole life like it has an early expiration date. Recently, a drug was FDA-approved that could change that. I'm grateful, but I'm also scared…

Amy-Braid-Headshot
| 5 min read
Pam Baker - Alaska Photo

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CF Community Reacts to Approval of Orkambi

Earlier this month, we learned that the new CF drug Orkambi was approved by the FDA. This was such an exciting, memorable and emotional day for everyone in the CF community. We heard from many who were thrilled about the potential for this drug to help people with CF and also heard from those who would not benefit from this breakthrough. Following are some reactions from those this impacts the most: people with CF and their loved ones. 

Danielle-Lowe
| 5 min read
Mike Boyle_Rectangle

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Video: What’s Next for Clinical Research?

The CF Foundation is focused on bringing forward new therapies to help people with CF enjoy the best health and quality of life. 

Christina-Roman
| 1 min read