I shadowed a mom and her 5-year-old with CF from afar for 24 hours. It taught me more than I could have imagined about living with a life-shortening disease — and about myself. This “empathy exercise” was organized by Smart Patients, an online community where patients and caregivers learn from each other.
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Disconnectedness kills, connectedness heals
If you crave inspiration, tune in to the Robert Wood Johnson’s Pioneering Ideas podcast by subscribing to the iTunes feed or listening on Soundcloud: https://soundcloud.com/rwjf-podcasts/final-cut-episode-8/s-q4foj
Speak up: The network is our superpower
I have a new post up on Medium, illustrated with this gem from a 2012 post: An excerpt: We can’t let misinformation—or worse—go by without comment. I think it’s time for more people to speak up in health care. More pediatricians should express their measles outrage. More people should chronicle the reality of living with chronic conditions.
Rare Disease Day
Today is Rare Disease Day, when we honor the millions of people who teach us what it’s like to live at the edges of the known world of medicine.
What if?
Quick explanation: I tweeted “What if this Pew Research GIF was played on a loop in Times Square?” and my friend Mike Lee made it happen (in our Photoshopped dreams). What if every conference displayed it on a screen, so that every public conversation in every industry was framed by the context of the coming […]
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