11th Moebius Syndrome Conference
375 people from throughout the world attended the 11th Moebius Syndrome Conference, Friday through Sunday, July 18-20, 2014 in North Bethesda, Maryland, just outside of Washington, DC.
12th Moebius Syndrome Conference
The 12th Moebius Syndrome Conference will be held at the Long Beach Hilton, Long Beach (Los Angeles County), California, Friday July 15 – Sunday July 17, 2016.
Rare Disease Day
Rare Disease Day is a day of advocacy to bring attention to rare conditions in the US and worldwide, and is celebrated on the last day of February each year.
New TV Series Looking for People with Rare Conditions
We are currently working on a new TV series for a well-known US network (for American television) about people with rare conditions. The documentary series will tell the stories of these inspirational individuals through their own eyes and that of their parents, carers, and close family and friends.
Free Moebius Syndrome Awareness Posters Available in the Moebius Marketplace
The Moebius Marketplace is now taking orders! Necklaces, wristbands, bracelets, sunglasses and children's t-shirts are available.
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.
Moebius Syndrome Awareness Day
Moebius Syndrome Awareness Day is held annaully on January 24. Details of 2015 projects are here!
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.
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.
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.
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.
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.
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.
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.'
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
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