We are enthused to be raising awareness about Moebius syndrome this January with the Many Faces of Moebius Syndrome, the Moebius Syndrome Foundation, and the Moebius Syndrome Research Trust, three organizations that care deeply about this rare, craniofacial condition. We hope through our joint effort that more people worldwide will be informed about Moebius syndrome, and that those who live with it will feel even more supported. Please remember to wear purple on January 24th, Moebius Syndrome Awareness Day. Keep an eye on the CCA Facebook page for #MoebiusMonday posts and other related content in the weeks leading up to January 24th. Below you will find a press release with more information about our worldwide awareness efforts.
The Many Faces Of Moebius Syndrome (www.manyfacesofmoebiussyndrome.org), the Moebius Syndrome Foundation (www.moebiussyndrome.org), the Moebius Syndrome Research Trust (www.moebiusresearchtrust.org), and Children’s Craniofacial Association (www.ccakids.org) are proud to announce the 10th annual Moebius Syndrome Awareness Day which will be celebrated worldwide on Friday, the 24th of January, 2020.
Moebius syndrome is an extremely rare congenital neurological disorder which is characterized by facial paralysis and the inability to move the eyes from side to side. Most people with Moebius syndrome are born with complete facial paralysis and cannot close their eyes or show facial expressions. Limb and chest wall abnormalities often occur with the syndrome. Respiratory problems, speech and swallowing disorders, visual impairments, sensory integration dysfunction, sleep disorders and weak upper body strength may also be present.
It is estimated that there are between 10,000 to 25,000 cases of Moebius syndrome worldwide.
In past years, Moebius Syndrome Awareness Day has been a resounding success and saw participation from every continent on the planet – the main focus of the day is to create awareness. MSAD events have taken place around the globe in homes, schools, churches, workplaces, auditoriums, and outdoors. Dozens of news stories have hit the headlines, wound up on the airwaves, and blasted off into cyberspace via various print, TV, radio and social media news publications!
Family, and the importance thereof, in the lives of individuals who have Moebius syndrome is the focus of this year's Awareness Day. "It is a tribute to the many families around the world who are often the unsung heroes of our lives" says Tim Smith, President of the Many Faces of Moebius Syndrome, who himself has the condition.
"There is no substitute for a loving, supportive family whether that family is biological, or our worldwide Moebius family. Knowing someone is there to support and fight for you when the going gets tough makes living with Moebius syndrome a little easier,” says Vicki McCarrell, former President of the Moebius Syndrome Foundation.
Moebius Syndrome Awareness Day is held annually on the 24th of January, the birth date of Professor Paul Julius Moebius, the doctor who first diagnosed the disorder in 1888.
Please join the Global Moebius syndrome community and take part in one of the many family gatherings taking place on January 24, 2020. We encourage you to proudly wear purple and do some of your own research to educate yourself and others about Moebius syndrome. We appreciate your support and look forward to the biggest Moebius Syndrome Awareness day ever!
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And Houston area friends, join this event:
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And Houston area friends, join this event:
Sixth Annual Houston-area Moebius Syndrome Awareness Day Event
Date: Saturday, January 18, 2020, 1:00 pm to 5:00 pm
Location: St. Theresa's Catholic Church, 6622 Haskell St., Houston 77007
- Refreshments will be served
- Attendees are encouraged to bring beverages, side dishes and/or desserts to share
- Toys and games will be available for children
- Professionals will be available to meet attendees and answer questions
- Door prizes to be given out
To RSVP or ask questions, email Roland Bienvenu at [email protected] or Larry Garza at [email protected]
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