66 roses
Saturday, February 28, 2015
Rare Disease Day 2015
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A few years ago, I wrote this post about what a typical day looks like for us. What I wasn't able to articulate at that time, whether ...
Thursday, February 5, 2015
That time I went to the White House (part 2)
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On Friday, January 30, 2015, I arrived at the White House (yes, the one the President lives in) at 9:30am. I found some of our CF Foundation...
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Saturday, January 31, 2015
That time I got invited to the White House (part 1)
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"Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our dar...
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Tuesday, January 20, 2015
Creating the CF Care Model of the Future (for real, y'all!)
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For many, many months now (as in enough months to make up years), I've been talking about how we can improve the current system for cyst...
1 comment:
Keepin' on keepin' on
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It's been so long since I've blogged that I don't even know where to start! I guess I'll tell you a little bit about what...
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Saturday, January 17, 2015
Happy belated new year!
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The blog is still a thing. Everyone in the house has a stomach bug. I have a longer story about how we're avoiding another sinus surgery...
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