Today, folks, we’re going to talk about labels and why they’re bad. The terms “fibro” “cyster” and “CFer” are all labels that get tossed around the CF community. I don’t like them. In fact, I feel second hand embarrassment when someone uses any of the above to describe other people with CF. In a world...
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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 often get asked, “How do you stay so motivated?” The answer is always the same, my health. My health is my ultimate motivator. I can do the things I want to do when I’m healthy, and I can’t do the things I want to do when I am sick. Simple enough, right? The answer...
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How many times have you been asked to contribute to the greater good of your condition in the name of awareness? Awareness is a nice thing, but what does it achieve and are you selling yourself short? My answer is yes, you are selling yourself short, and awareness is another way of saying, “recognition.” You...
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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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I am going back to school, and it’s just starting to feel like real life. Within the past couple of weeks I was accepted into the MBA program at the Tuck School of Business at Dartmouth and the MPH (Masters of Public Health) program at The Dartmouth Institute For Health Policy and Clinical Practice. As...
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