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”

Caffeine, Canines & Camaraderie

This is a sponsored post for Self Care Catalysts. I have been compensated through the Chronic Illness Bloggers network. All opinions remain my own and I was in now way influenced by the company. Sometimes I majorly fail at self care. I have things to do, work to do, lots of deadlines and should-do’s inContinue reading “Caffeine, Canines & Camaraderie”

Communities

In the rare disease community, so much is written about finding people who share your same condition. And while that is indeed valuable, one of the most impactful parts of my MedicineX experience last weekend was how similar experiences are across varying conditions. That’s not necessarily a positive thing – the undercurrents of frustration, painContinue reading “Communities”

Miscellany

This weekend I am going to MedX, a big conference this weekend about tech, social media and health. Super-excited! They have an espresso bar. Enough said. Had a great riding lesson today! Big takeaways: horse has four feet (duh), counting one two three four helps so much with getting a good collected walk; sitting trot:Continue reading “Miscellany”

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”