My Message to the St. Louis University School of Medicine Class of 2019: Listen to Your Patients!

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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Do You Have a Nonsense Mutation?

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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Pharmacy Benefit Managers In the Spotlight

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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Bizarre ‘Five Feet Apart’ Ad Campaign Compares Inconveniences to Living with Cystic Fibrosis

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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New Triple Combo Data Released! What We Know?

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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Don’t Fall Victim To Aggressive Marketing Campaigns, Reusable Masks Are NOT Appropriate for Cystic Fibrosis Patients

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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