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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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Hope and Anxiety as My Children Await Trikafta for Ages 6-11

Although I'm glad that my two children with cystic fibrosis will soon have the opportunity to try Trikafta, I am also a little worried about whether they will have side effects and how well they will do on the drug long-term.

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| 5 min read
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I Better Start Saving for 100 Days in Hawaii

When my 8-year-old daughter with CF found out that the disease is potentially fatal, I was grateful for her optimistic views on life and death. But deep down, I was saddened with the thought of a cure being so far away that I wouldn't be around to see it. Today, my fears have dwindled. 

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| 3 min read
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WATCH: New Developments in Drugs to Reduce Infection, March 2016

Dr. Jennifer Taylor-Cousar shares new developments in drugs that fight infections in the lungs of people with cystic fibrosis.

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| 1 min read
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WATCH: New Developments in Drugs to Restore Airway Surface Liquid, March 2016

Dr. John P. Clancy shares new developments in drugs that restore airway surface liquid in the lungs of people with cystic fibrosis, making it easier to clear mucus.

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| 1 min read
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WATCH: New Developments in Drugs to Reduce Inflammation, Feb. 2016

Dr. James Chmiel shares new developments in drugs to reduce inflammation in the lungs and help prevent lung damage.

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| 1 min read
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WATCH: New Developments in Restoring CFTR Function, Feb. 2016

Drs. Drucy Borowitz and Manu Jain share new developments in drugs that will treat the underlying cause of cystic fibrosis. 

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| 2 min read
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The Heart of Science

The radio stations are filled with holiday music, but as 2015 comes to a close, I find myself listening to an entirely different playlist. In my mind, there are not only songs that make me reflect on the path that my family has so carefully traveled so far, but also the hope and the promise of all the good things yet to come.

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| 4 min read
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Mara Goes to Washington

Last week I travelled to D.C. to serve on a panel discussing the recent developments in precision medicine. I've got to say, it was pretty neat.

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| 3 min read
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NIH Research Forms Basis for Advances in CF Treatment

As Congress weighs budget appropriations, we look at long-term funding for the National Institutes of Health. We decided to sit down with the Foundation's senior vice president of research affairs to learn more about why the work being done at NIH is so important in the search for a cure for CF and other serious, rare diseases. 

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| 5 min read
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How an Experimental Drug Becomes an Approved Therapy

Ever wondered what it takes for a potential cystic fibrosis drug to become approved by the U.S. Food and Drug Administration? Here's an explanation of the four phases of clinical research.

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| 2 min read
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Opening Doors to CF Clinical Research

There have never been as many new CF drugs in development as there are today. In the second plenary at NACFC, Dr. George Retsch-Bogart outlined the progress we've made, the road ahead and the changes needed to make it all possible. Read on for my key takeaways.

Christina-Roman
| 3 min read
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Paddling Hard in the Right Direction

When Brady was diagnosed with CF, I felt like I'd been thrown into a river without a paddle. But then I realized my “paddle” was CF advocacy, and it could help steer our boat in the right direction.

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| 5 min read