NORD Rare Disease Day
NORD is the official US Sponsor of Rare Disease Day on Feb. 28, 2010. Its purpose is to raise awareness of the challenges related to having a rare disease, the need for more research, and the fact that rare diseases are an important public health issue.
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
GoodSearch
There is a web site that can be used when searching the Internet that will donate to the Moebius Syndrome Foundation each time it is used.
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.
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.
Oral Motor Research for Children 3 to 10
Oral Motor Research Study by Sara Rosenfeld-Johnson: Looking for Children 3 to 10 to participate in NJ, CA and CO. Call 720 514-9216 or email jennifer@gmail.com for more information.
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 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.'
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
