NORD has launched an updated website for Rare Disease Day USA, 2/28/11. Interesting stuff, and great to be involved with. Although it often seems like no one knows anything about Moebius, it’s important to keep the perspective that there are thousands of other, similar conditions that are equally (if not more) rare. It’s wonderful that organizations such as NORD allow different, smaller organizations to work together to try to work on more large-scale change and advocacy.
I can't say that I recognized Moebius by the name (I was thinking of Moebius strips… is that the same word or no?), I do believe I saw a program on TV about a child that had Moebius syndrome. It could have been something else, but the child could not move her facial muscles and as such could not form facial expressions. That is similar, yes? I have been captivated by what it would be like to have such a condition. My first thought was that it would be so difficult for me to not be able to express myself through my face; I am full of faces and I do a lot of theater as well. On the program though it also talked about how others react to someone who doesn't (can't) smile at them.Anyway, I didn't find your blog by searching for rare disorders… I was actually checking out blogs with the common interest in Next to Normal. (-: I look forward to reading more though and getting to know you!