Cystic Fibrosis March Madness is back! Join the fun and help vote your favorite “team” to glory. This year we are searching for The Most SMH thing someone has said to you about your CF! We have broken the teams into four regions – QUESTIONS, RECOMMENDATIONS, STATEMENTS, and THINGS SAID TO PARENTS, PARTNERS AND FRIENDS. We...
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Last week at a Boomer Esiason Foundation event, we announced the creation of the Lea Faraone Memorial Scholarship for students with cystic fibrosis who want to study abroad! Lea loved to travel and try new things, so we think supporting students who want to study abroad is a great fit for a scholarship in her...
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It’s been awhile since we have talked about the importance of the Americans with Disabilities Act, how we can invoke it and why it is so important we preserve its purpose. College Admissions Scandal Exploits Disabilities The big story barreling through the news cycle is the so-called college admissions scandal where a number of people,...
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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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John and I met in 1990. Yes, 1990, in Ms. Hairston’s kindergarten class. After one year of school together, I switched schools and we wound up in different grades. I remember seeing John around town, but we never spoke again until after college in a NYC bar where he came over to talk to me....
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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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