SPEAKING OF "I'VE NEVER HEARD OF THAT!" DEPT:
Many tell us, when they first meet us, that they've never heard of Moebius Syndrome before.  But I've never heard of what this young girl has--a rare disorder that makes her unable to ever feel pain, even when she burns her hands as a baby:
"Years later, Ashlyn’s happy demeanor was diagnosed as congenital insensitivity to pain, a rare, incurable disorder caused by the mutation of one or more genes that control pain sensitivity. Later research from the University of Florida revealed in 2009 that the affected gene in her case was SCN9A, which produces the molecule that is involved in directing nerve impulses to the brain. A mutation that causes this molecule not to function leads to the inability to feel pain, but if it becomes overactive, then it leads to severe pain."

THE STUDIES CONTINUE:
For those who are interested, here's a link to an abstract of an article summarizing a clinical study of patients with Moebius Syndrome, done in South America.  It didn't appear to me to find anything revolutionary, but it still may be worth reading...

MOEBIUS MEMORY:
It's 2002, and I am attending my first Moebius Syndrome conference.  I think I was introducing myself to Matthew Joffe, who of course is on the board of the Moebius Syndrome Foundation.  I'm sure I was a bit nervous...

Me:  "Hi, nice to meet you, I'm a 40 year old adult with Moebius Syndrome."
Matthew:  "I can see that."

You know, I bet he could...!