MOEBIUS SYNDROME AWARENESS UPDATES

First:  our own Kathleen Bogart not only is doing great research on Moebius and led an influential awareness campaign leading up to Moebius Syndrome Awareness Day; she also is receiving plaudits from the local paper in Corvallis, Oregon, where her university, Oregon State, is located.  Every week the Corvallis Gazette-Times runs a feature called "Roses and Raspberries", where some in the local area get praised, and others...don't.  Don't worry--Kathleen got a rose:

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ROSES to Oregon State University psychology professor Kathleen Bogart, who is professional and matter-of-fact about her work in educating the public about a rare disorder known as Moebius Syndrome. Facial paralysis is the rare congenital disorder’s most visible effect.

Last week, from Tuesday through Friday, rain or shine or fog, she and some of her students staffed a table at the Memorial Union quad to spread the word and increase understanding about a topic she knows all too well, as she was born with Moebius Syndrome.

According to the Moebius Syndrome Foundation, “Moebius syndrome is a rare neurological disorder that is present at birth. It primarily affects the 6th and 7th cranial nerves, leaving those with the condition unable to move their faces (they can’t smile, frown, grimace or blink their eyes) and unable to move their eyes laterally.”

We thank Bogart her for sharing her experiences with us in the article we published Saturday, availalbe at http://tinyurl.com/nxpw9tx). People who would like to learn more about Moebius Syndrome can see http://www.moebiussyndrome.com.

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Let me also help spread the news about a couple of other opportunities.  First, from the Moebius Syndrome Foundation:

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The Moebius Syndrome Foundation is seeking applications from young adults with Moebius syndrome aged 16-21 to join a new advisory board. This group will advise the Moebius Syndrome Foundation about issues relevant to young adults. For example, the board may suggest ideas for conferences and engage in social media campaigns. The board will meet via videochat approximately twice per year and will help run teen and young adult activities at the biannual conferences. Please email Kathleen Bogart at Kathleen.bogart@oregonstate.edu to request an application. Applications are due by March 1, 2015.

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And, from The Many Faces of Moebius Syndrome:

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MSAD 2015 was huge. We took in over 1300 photos. Now we need the stories behind the photos so we can share our Reflections of MSAD 2015 with the rest of the world in a pdf booklet put together by our own Rebecca Maher. Please send us your reflections, info, and thoughts to MSADreflections@gmail.com,by 2/15/2015. Individually we are a drop. Together we are an ocean. For MSAD 2015 we sent a tidal wave of awareness around the globe. Now it's time to tell how we did it! The information you share can be as small as a paragraph or as long as a short story. What's important is that it comes from our hearts, like our smiles.
Thank You
Tim Smith

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