Longtime readers will recognize this story, but I’m posting it again here–and on Medium–to honor Moebius Syndrome Awareness Day: When Burt Minow was born in 1922, his disability — partial hearing loss and complete facial paralysis—was immediately apparent. His mouth was frozen in a sort of frown, and he could not suck on a nipple to get […]
e-patient stories
Save us, Facebook
The Reuters story about Facebook taking its “first steps into healthcare” read like an announcement that Las Vegas was getting into entertainment or that New York City was getting into fashion. Extraordinary health communities have grown up between the cracks of Facebook’s platform. It’s just that up until now executives publicly looked the other way. […]
20 minutes
Food Allergy Awareness Week is May 11-17. I decided to honor it by writing my first public post about being a food-allergy mom. Wendy Sue Swanson, MD, aka @SeattleMamaDoc, is generously hosting it on her blog, where I hope it will reach many, many people. I’d love to hear what you think — about being […]
Every-day magic
I’ve been following Bertrand Might’s story for a few years through his parents’ blog about his “movement disorder” (which turns out to be related to his incredibly rare condition, NGLY1 deficiency). Last week, Matthew Might co-authored a commentary with Matt Wilsey in the journal of the American College of Medical Genetics and Genomics: “The shifting model […]
Put down the clipboard and listen
Here are the remarks I prepared for the Feb. 6, 2014, Engage & Empower Me class at Stanford Medical School. It’s a long post, so if you’d prefer to zone out, you can watch the video. In thinking about this class, I thought a good framing question for tonight is: How does change happen? How […]
Stanford Medicine X: Participatory research
Brett Alder and I spoke last night at Stanford Medical School’s Engage & Empower Me class: Today is a travel day for me, back to the East Coast, so any comments posted may wait in the queue — but please let me know what you think! I’ll post more about this event when I’m home, […]
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