Moebius Syndrome Awareness Day Jan. 24: Facial Paralysis Info · Moebius Syndrome Foundation · Kara Smiles Fund · Donate · #MSAD2019 · Austin Halls
Moebius Syndrome, named after neurologist Dr. Paul Mobius, is a rare congenital neurological disorder which is primarily characterized by facial paralysis, including the inability to move their eyes from side to side, or form even the most basic facial expressions — things that are often mistaken for being mentally challenged.
The physical conditions that can accompany Moebius Syndrome include limb, extremity and chest wall abnormalities, swallowing and respiratory issues, sensory dysfunctions, sleep disorders, and autism. And then there are the social conditions.
“It’s a huge problem,” says Tami Konieczny, supervisor of occupational therapy at the Children’s Hospital of Philadelphia (CHoP). “If someone can’t read your facial expressions, then it’s difficult to be socially accepted. It’s hugely devastating for kids.” Ronald Zuker, a Canadian plastic and reconstructive surgeon, agrees:
“If you don’t have the ability to smile, people mistake your appearance for being disinterested, or not too bright, or not very involved in the conversation.”
The Kara Smiles Fund was created to help offset qualified medical expenses for those seeking the “Smile Surgery” with primary persons suffering from facial paralysis, including by not limited to Moebius Syndrome, cleft lip, Bell’s palsy. Grant distributions from the Fund are made to qualified medical facilities assisting with qualified medical expenses.
Moebius Syndrome Awareness Day is an international event, drawing participation from individuals around the world, including not only those with Moebius, but also spouses, significant others, parents, children, grandparents, aunts and uncles, friends, and associates of those with Moebius.
We encourage you to visit our Moebius Syndrome Awareness Day website at MSAD2019.com to educate yourself and others about Moebius Syndrome, and we appreciate your support.
Please join the global Moebius Syndrome community by proudly wearing purple on Thursday January 24, and post your photos on social media using the hashtag #MSAD2019.