For work, I’m a librarian (specifically, teen services librarian at a large suburban public library), and also do freelance social media and graphic design for non-profits. I love the arts (huge theatre fan, love museums, music, and being crafty), travel, and volunteering for a few different nonprofits. I have a dog and ride horses for fun.

Moebius syndrome is a rare craniofacial neuromuscular disorder that causes issues with cranial nerves 6 & 7, plus some other assorted ones, limb abnormalities and assorted other things for different people (virtually all people are addicted differently). For me it means that I have partial facial paresis (feeling is fine, but movement is limited): I was born with strabismus, can’t fully smile, can’t frown at all, blink, close my eyes or move my eyes side to side or my eyebrows at all. For me it also affects me neurologically – I have issues with balance, coordination, fatigue and depth perception. I have a repaired club foot that also causes issues. It also randomly causes issues with sleep. Think that’s all but have probably forgotten something, such is the nature of trying to recite one’s looong medical history!

Hmm… In general, not judging people who might look different or have a speech impairment. [There is] nothing worse than being talked down to! But also that rare disease patients are experts – I’ve probably met more people with Moebius than many doctors.

Cassius is a service dog from Canine Companions for Independence, he helps me with mobility tasks I find difficult due to my neuro[logical] and pain issues. He loves carrying things for me, picking things up that I drop, and helping me with things like taking my socks off.

This is awareness season and I always struggle with trying to push beyond awareness to action. I honestly don’t care too much if people know the names of all 7,000+ rare diseases that are out there, but action supporting people who live with them is crucial… every year I try to figure out how to articulate this and never am really satisfied.