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Portland Ore – I express myself with…… That’s the question being asked by a professor and a group of students at Oregon State University. It’s part of an awareness campaign for Moebius Syndrome.Moebius Syndrome is a rare neurological condition that affects around 20 of every 1,000,000 people born each year. Many grow up to lead normal lives while in others the syndrome is more sever and leads to other health issues.
Moebius Syndrome primarily affects the 6th and 7th cranial nerves, leaving those with the condition unable to move their faces (they can’t smile, frown, suck, grimace or blink their eyes) and unable to move their eyes laterally.
My daughter Lilli was born with Moebius Syndrome in 2008. It has been scary and difficult at times knowing that your child is different. She will never smile like you and me and that is a difficult lesson to learn for a 38 year old let alone a 6 year old. She’ll come to my wife and I and times, using her fingers to push up the corners of her mouth to say “Look at my smile”. Heartbreaking to say the least. We do our best to let her know it’s not what is on the outside that is important. We tell her she has a beautiful smile and we would not change a thing. I also like to joke with her and tell her that some day she’ll make me a lot of money playing poker. No one will be able to read her facial expressions!
We had only met one other person with Moebius Syndrome and that was a chance meeting 
while at Sea World in Florida. But thanks to Facebook we will always be connected to Gabby and her family. The Internet has helped us talk with other families around the world but it’s really not the same as that one on one meeting.
while at Sea World in Florida. But thanks to Facebook we will always be connected to Gabby and her family. The Internet has helped us talk with other families around the world but it’s really not the same as that one on one meeting.
This past week while looking at the Moebius Syndrome Foundation Facebook page, I noticed a post from Oregon State University talking about a Moebius Awareness campaign. I emailed Dr. Kathleen Bogart, the director of the Disability and Social Interaction Lab at OSU to learn more about the campaign.
On the front page of the campaign there was a picture of a woman with Moebius. In my e-mail conversation I asked Dr. Bogart who the woman was and to my surprise she told me it was her.
The excitement I felt jumped through the roof. I was able to go home that night and tell Lilli that I know she can do anything she want’s including becoming a Doctor! A little silly I know but there is a huge stigma when it comes with many disabilities. Having facial paralysis can make social interaction hard because of how accustomed we are to receiving feedback from someone’s facial expressions. Dr. Bogart tells me this can lead others to inaccurately view people with Moebius as less happy or friendly, when truly they are just expressing themselves in a different way.
Dr. Bogart and her students are working to raise awareness of Moebius by starting a social media ahead of the National Awareness Day. They’re asking everyone to look beyond face value and take a photo of yourself holding a sign answering the question, “how you express yourself?”
You can use their template, or write your own. Then post it on the Moebius Syndrome Foundation Facebook Album. Challenge two of your friends to do the same by tagging them. Post on Twitter and Instagram with the hashtag #moebiusawareness, or e-mail them to kathleen.bogart@oregonstate.edu to be posted.
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The link to the original story above also contains the original radio program on which this story aired, and an interview with Dr. Bogart. Moebius Syndrome Awareness Day is powerful stuff. :)
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