My love/hate relationship with social media took a turn for the best this past weekend. My Instagram account reminded me of a picture from two years ago: I was on a Long Island beach (best in the world, by the way) on a cool September evening. It was right after Darcy and I took some...
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Darcy and I are writing complimentary blogs this week. We’re posting hers today and mine tomorrow! Gunnar and I have officially lived together for about a month, and I am here to report that it has felt very….. ordinary. My Mom says that if a relationship is right, living together should feel like home. Thus...
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This past weekend I was honored to deliver the 2019 St. Louis University School of Medicine Pre-Commencement address. My very first pediatric doctor at Cincinnati Children’s Hospital, Robert Wilmott MD, is now the acting dean at the SLU School of Medicine and extended the invite to me not long ago. I so very much appreciate...
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Lea slid into my DMs about two and a half years ago asking if I’d be willing to help her with a video she was making for Tiffany Rich’s transplant recovery. Lea’s best friend was in a dire situation and all she wanted to do was help. Little did I know that would be the...
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I LOVED tuning in to the North American Cystic Fibrosis Conference live stream this past week. It was amazing to be a fly on the wall listening to everything that’s going on in the world of cystic fibrosis, and not just the medical research! Some of the qualitative programs were just as impactful as the...
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An upcoming movie from director Justin Baldoni, Five Feet Apart, must tread carefully as it surrounds a sensitive subject – cystic fibrosis cross infection. The movie, slated to release next spring, will also be adapted into a Young Adult novel coming in November. The premise of the story, coming from FlickeringMyth.com: Stella (Haley Lu Richardson)...
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The Patient Registry might be the most important innovation from CFF in its history. It’s one of the main reasons that we are seeing the kind of success that we all enjoy today. From CFF: Since the 1960s, the CF Patient Registry has collected information about people with CF who receive care at CF Foundation-accredited care...
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