Thinking Zebras

Hear Hoofbeats? Think Zebras I don’t know where that phrase originated in the rare disease community, but I love it. If we are going to take this even further, I am probably a zebra with extremely funky and unique stripes as I’ve managed to get myself a collection of unrelated rare diseases. Thinking zebras isContinue reading “Thinking Zebras”

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”

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”

Channeling Pride

I ended up in San Francisco yesterday for the first night of the American Library Association Annual Conference, listening to everyone buzzing about the SCOTUS decision and their plans for the weekend. I think the concept of pride as a movement is amazing, and a reminder to channel my own disability pride. I mean, I’mContinue reading “Channeling Pride”

A Preview of Rare Disease Day 2014

My dog’s getting into the spirit of the day! Actually, he just really likes to hold things so I capitalized on that in this instance. Tomorrow I’m going to Sacramento, CA with many other rare disease advocates from across the state, along with the National Organization for Rare Disorders and the Global Genes Project. We’reContinue reading “A Preview of Rare Disease Day 2014”