Salt in My Soul is a powerful, heartbreaking and inspiring look at Mallory Smith’s life. There are some spoilers ahead, so use this as a warning. She was a brilliant writer who embodied everything it means to live a shortened life to the absolute fullest. She managed to live independently, hold a job, have a...
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I guess a better question is…. Do you (or does your child) have a nonsense mutation? If the answer is yes – whether it’s a single nonsense mutation or a pair – the Patient Registry over at Emily’s Entourage (EE) is for you! Not to be confused with the Cystic Fibrosis Foundation’s Patient Registry, the...
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I am not someone to speak highly of our federal government, regardless of who is in power, but I don’t think I have ever felt so proud of our elected officials. Yesterday, the Senate Finance Committee, in a bipartisan effort, led by chairman Chuck Grassley (R-Iowa) and ranking member Ron Wyden (D-Oregon) called executives from...
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UPDATE (3/12/19) 4:30PM: The “video” advertisement discussed below, which was regrammed to @Breathe_In_Pod, was reported and then subsequently removed from Instagram. It’s a real shame because there was a constructive discourse in the comment sections between people living with cystic fibrosis. We’ve also been made aware some influencers commented apologies on the posts in question,...
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If you were up bright and early this morning, you saw Vertex released limited results from their VX-445 clinical study stating the trial achieved it’s primary endpoint, and showing significant improvement in FEV1 at the 4 week mark in people with one copy of F508del and people who are homozygous F508del. If you recall, Vertex has TWO...
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Alright, folks, here we are again… talking about respirators. Think of this as a gentle reminder…. Reusable respirators are NOT suitable for people living with cystic fibrosis. I’d like to think we’re beyond this, but the question does come up quite frequently. Unfortunately, I don’t think our care providers do a great job of explaining...
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What a time to be alive! Extinct illnesses are BACK. What a time to be alive, indeed. In fact, it’s quite depressing that here we are, discussing the selfishness of people who refuse to vaccinate their kids in response to a mythical fear. It’s equally depressing for all of us to feel the need to...
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