This post was written by Megan DiBenedetto. She is 28 with cystic fibrosis from the New York City area and is a practicing nurse at NYU Langone Health. I’m 28 years old with cystic fibrosis and I’m a bone marrow transplant nurse for NYU Langone Health, a New York City area hospital system. I received...
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Since the beginning of the COVID-19 vaccine development process, Moderna has sought to be incredibly transparent with the trial population – from age groupings, to racial identifiers and risk groups. Today’s release of data about their vaccine candidate has not been any different. Embedded in the FDA’s briefing document on the Moderna COVID-19 Vaccine, the...
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The FDA’s vaccine advisory meeting is today where it’s probably all but certain that the committee will vote to move Pfizer/BioNTech’s vaccine across the Emergency Use Authorization finish line to begin the largest mass vaccination campaign since polio vaccinations began in the mid 20th century. If you’re following me on Twitter, you know I have...
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It is just going to look different. Like so many, Darcy and I are avoiding travel for Thanksgiving. We are staying inside New England’s sphere of regional quarantine rules for Thanksgiving. It’ll be my first Thanksgiving without my family. It is disappointing. It is disappointing because of the role Thanksgiving plays in our family. It...
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Last week I celebrated one year free of IV antibiotics. Darcy and I took a stroll down main street in Woodstock, Vermont and grabbed coffee at one of our favorite cafés in the area. It’s a milestone that we always love to celebrate because memories of just the opposite still plague our thoughts. In the...
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With the calendar turning to October this week (thank God 2020 is coming to an end), we will be celebrating one year of Trikafta’s availability in the United States. It goes without saying that a lot has happened since then – the most significant thing to celebrate is the CF community’s seemingly overnight transformation. Not...
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Yesterday was my first time INSIDE a CF clinic since February. The experience felt a bit surreal. At no point in my life did I ever think I would go without a visit to a CF clinic for more than half a year – especially considering the rate of my visits in my early twenties....
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