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, pain… Read More Communities


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:… Read More Miscellany

Mailing my spit

  So this is what making saliva samples to some of the preeminent Moebius syndrome researchers in the country looks like! They are actually going to sequence the entire genomes of both me and my parents, which is pretty cool! They gave me the option to get information on everything – even what’s totally unrelated to… Read More Mailing my spit


  The song lyrics from which this blog gets its title, last night in Concord: Still I can’t be still Still I can’t be silent Still I can’t be still Still I can’t be saved Still I can’t be still I can’t be silent Still I’m….still The insatiable peace My quest for, for true serenity, yeah… Read More Still…


Fittingly, I will be spending part of this 25th Anniversary of the Americans with Disabilities Act at work.     It is a good reminder for me to step back from obsessing over career trajectories and picking up more shifts and so on to think about the fact that it is in part because of the… Read More ADA25