Moebius Syndrome Foundation Administration

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News & Events

11th Moebius Syndrome Conference

Plan to attend the 11th Moebius Syndrome Conference, Friday through Sunday, July 18-20, 2014 in North Bethesda, Maryland, just outside of Washington, DC. The 2014 conference will take place at the Bethesda North Marriott Hotel & Conference Center.

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New Oral Placement Therapy Study For children with Moebius syndrome ages 5 to 18

A research study will take place to find out how Oral Placement Therapy helps improve facial expression, feeding abilities and speech production in children with Moebius syndrome. Recruitment begins July 2013.

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Rare Disease Day

Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year.

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Moebius Syndrome Awareness Day

Moebius Syndrome Awareness Day is held annaully on January 24.

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Pearls Project Blog

Positive Exposure's PEARLS Project is a ground-breaking educational tool which invites students to learn about their peers living with genetic, physical and behavioral differences through an image gallery and safe online blog.

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10th Moebius Syndrome Conference

The 10th Moebius Syndrome Conference was held Friday, July 13, 2012 - Sunday, July 15, 2012 in Philadelphia, Pennsylvania. 425 people - 114 with Moebius - from 10 countries attended, making it the largest Conference ever. Over 100 people attended for the first time.

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Moebius Connect Website

This new website will soon feature an interactive, clickable map so anyone in the Moebius community can easily connect with other individuals, organizations, foundations, medical professionals and support groups in their region of the globe.

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Social Networking Sites

The Moebius Syndrome Foundation is now on Facebook and Twitter! The Facebook group (Moebius Syndrome Foundation) has updated information on the 2010 Conference, a place for people to post their stories or questions, and a discussion forum. The Twitter feed (@MoebiusSyndrome) has disability and Moebius syndrome-related links and information.

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Shameless: The Art of Disability

"Shameless: The Art of Disability" is now available to view (free) at the National Film Board of Canada website! This iconic feature-length documentary about disability and creativity is a National Film Board of Canada production, directed by the noted documentarian, Bonnie Klein and released in 2008

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Genetic Alliance Survey - Gene Talk

Gene Talk: What do we expect from Families and their Doctors? Members of the Moebius Syndrome Foundation have been asked by the Genetic Alliance to be involved in a research study which has the potential improve medical care for our community.

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Award Winning Photo - Boston Globe

The July 24, 2008 edition of the Boston Globe featured an enchanting photo of Jessica Leahy of Massachusetts, in her favorite ballet pose. Photographer Essdras Suarez won the Editor & Publisher prize for the feature photograph which was printed with the article "When life hangs by a tube." The article is about Jessica and other children who live with trachs.

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The Faces of Moebius Syndrome: Journal Article

"The Faces of Moebius Syndrome: Recognition and Anticipatory Guidance": A new article in The American Journal of Maternal / Child Nursing (MCN) written by Anne Bienvenu Broussard and June G. Borazani on Moebius syndrome is available on this web site, courtesy of Dr. Margaret Freda, editor of MCN.

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Google Alert

Google alerts send automated emails to you whenever the topic you select is in the news. Follow these steps to set up a Google Alert for 'Moebius syndrome' or 'Mobius syndrome.' Go to www.Google.com and select 'News.'

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2007 Nobel Prize in Medicine

Winners of 2007 Nobel Prize in Medicine Already Impacting our Understanding of the Origins and Development of Moebius Syndrome, a Rare Neurological Disorder. Read the Press Release from the Moebius Syndrome Foundation

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Dr. Zuker Wins Art of Listening Award

The Genetic Alliance has awarded the 2007 Art of Listening Award to Dr. Ronald M. Zuker who pioneered the grascillis muscle surgery ("smile surgery") and has been a great supporter of the Moebius Syndrome Foundation. The Moebius Syndrome Foundation nominated Dr. Zuker for the Genetic Alliance Art of Listening Award, and he was selected from over 50 nominations

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Events

11th Moebius Syndrome Conference
11th Moebius Syndrome Conference

Plan to attend the 11th Moebius Syndrome Conference, Friday through Sunday, July 18-20, 2014 in North Bethesda, Maryland, just outside of Washington, DC. The 2014 conference will take place at the Bethesda North Marriott Hotel & Conference Center.

Read More


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