The elusive cure

This is the text of my 2016 Stanford MedicineX Ignite talk.   An estimated one in three hundred thousand to one in a million people are born with Moebius syndrome. I am one of those ones. The defining symptom of Moebius is facial paralysis — people with Moebius cannot fully smile, frown, move their eyebrowsContinue reading “The elusive cure”

Where rare isn’t so rare

It is a profoundly strange experience, going to a place where your (nearly) one-in-a-million condition is common. Strange isn’t bad, it’s just…weird! Last weekend, nearly 120 people from infants to senior citizens gathered for the 12th Moebius Syndrome Foundation Conference in Long Beach. To put it in perspective, under 100 people total (and 20ish withContinue reading “Where rare isn’t so rare”

Purpleness 

It is a good thing I like purple. Because I (well, minus the three days of work this week) will be both literally and figuratively awash in purple at the Moebius Syndrome Foundation Conference. Found this graphic on Photofy (love that app!) and, well, if purple is an idealistic color I like that color forContinue reading “Purpleness “

Conference journeys

  Last weekend, I attended a planning meeting for the 12th Moebius Syndrome Foundation Conference. As always, it’s lots of work with big rewards at the end… but can I reiterate, lots of work. It’s familiar work, though. I know the rhythms, the questions, the work I have to do. It is a long hallway withContinue reading “Conference journeys”