So besides the awesome Northern California get-together (70 people, 15-20ish(?) with Moebius syndrome, this post/Tweet that I put out there this morning pretty much sums up how I want to reframe advocacy, awareness and acceptance in the community.
So many people posted such well-meaning things saying they were smiling “for” their loved one with Moebius. I have a slightly adverse reaction to this… I want to be a participant in this. I don’t want things done for me. So… do this with us. Smile with us, especially when our smiles are different. Embrace that difference; collaborate on things that will highlight the uniqueness of everyone and most importantly…that there are many ways to express yourself
for more information on Moebius syndrome, check out moebiussyndrome.org.