The answer: A LOT. I decided to do some very rough back-of-the-napkin math to understand spending in the CF space because occasionally I come across a strange fundraising appeal that solicits donations for cystic fibrosis research on the basis that the US government does not fund research efforts for the condition. If you run in...
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I disclose my cystic fibrosis every time I fly. Of course, I have not flown since COVID-19 shut down the world, so I guess it would make more sense to say that I used to disclose my cystic fibrosis every time I got on an airplane in the before times. I will continue to do...
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I got my second Moderna vaccine dose over the weekend, and finally after a long year I am breathing a sigh of relief. If my experience this past weekend is representative of the nation at large, the demand for vaccines is still quite high. The clinic was packed wall to wall with vaccine recipients and...
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This past Saturday I got the call saying I could come off a COVID-19 vaccine wait list if I hustled down to a local vaccine clinic. I had nothing else going on (read: I have had anything else going on since last March) so I hopped in the car to get my vaccine. It was...
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This will be a first for the blog! Darcy and I co-wrote a post. Today is the one year anniversary of when we got engaged! The first two weeks of our engagement were amazing. I think we were riding as high as ever, and then the pandemic struck. We realized that we never really got...
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Gunnar has asked me to write a blog with my feeding tube recipes for a few years now, but it never felt right to me. After all, I’m not a dietician or nutritionist, so who am I to suggest what people pour into their gullet? But this week is feeding tube awareness week, and as...
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I will be the first to admit that I have pandemic fatigue. I miss having a beer after hockey with my teammates, I miss going to class, and I miss freely going to the grocery store without having to orchestrate some massive plan. I also miss the days when working hours wouldn’t blend into time...
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