Press Release – Moebius Syndrome Awareness Day 2020 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 The Children’s Craniofacial Association (www.ccakids.com) 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. ...READ MORE »

Contributed by Stephen Maldonado This is a common question in the Moebius Community. Honestly, this is a very personal choice, and there may not be a clear cut answer. Therefore, instead of trying to answer this in a “yes” or “no” form, here are some reasons why someone might choose to disclose or not disclose. Reasons You Might Choose to Disclose: It Makes You Feel More Comfortable. You may choose to disclose if doing so makes you feel more comfortable in your interview. ...READ MORE »

Once you announce that you’re looking for a new gig, unsolicited job search advice is inescapable: “Video resumes are the future!” “Go back to school!” “Talk to my cousin’s best friend’s son, he knows someone who used to intern there!” While all of the people sharing job search advice like this are well-meaning, they’re usually not career connoisseurs — just friends and family who want to help you out. As a result, the quality of their advice is ...READ MORE »

Why is it that in 2019 we are still using facial scarring as a device for villainy? Is it ethical to be calling upon real people with distinctive faces to play a role that is seen as scary, inhuman and nasty?  What sort of perception does this create for young people when they think of someone with a disfigurement?  Join us in our call to the producers of the new Lord of the Rings Amazon TV series to rethink the way that this perpetuates harmful stereotypes and impacts the lives of people with facial differences.  Please ...READ MORE »

A QCD is a direct transfer of funds from your IRA custodian, payable to a qualified charity. QCDs can be counted toward satisfying your required minimum distributions (RMDs) for the year, as long as certain rules are met. In addition to the benefits of giving to charity, a QCD excludes the amount donated from taxable income, which is unlike regular withdrawals from an IRA. Keeping your taxable income lower may reduce the impact to certain tax credits and deductions, including Social ...READ MORE »

REQUEST FOR APPLICATIONS: Grant Proposal to Study Moebius Syndrome and Sleep Disorders The MSF Grant Program provides seed-money grants to qualified investigators for scientific and/or clinical research.  The Moebius Syndrome Foundation has identified a need for additional investigation into the role of Moebius syndrome and sleep disturbances.  Anecdotally, many persons with Moebius syndrome have described difficulties with sleep, including, but not limited to, difficulty falling asleep, difficulty staying asleep, night terrors, sleep walking, sleep apnea, and decreased quality of sleep.  The ...READ MORE »

The European Union defines a disease as rare when it affects fewer than 5 per 10 000 persons,1 whereas the USA considers a condition rare if it affects fewer than 200 000 individuals.2 To date, however, there is no terminology to appropriately address these diseases as a category other than rare diseases, or in some instances orphan diseases when referring to conditions that lack the resources for treatment discovery. Even though these terms have helped thus far to describe ...READ MORE »

MEDIA RELEASE: For Friday 17th May 2019 Campaign for face equality ‘becomes a global movement’ with the first International Face Equality Week The Moebius Syndrome Foundation is pleased to announce a week of awareness-raising events, media coverage and social media activity begins around the world today to promote ‘Face Equality’ — the fair treatment of people with facial and body differences and the elimination of disfigurement discrimination. The 30 NGOs that are members of Face Equality International, the new alliance representing people ...READ MORE »

2 news segments featuring Kelsey Ferrill! https://globalnews.ca/video/rd/1431249475649/ Embracing visible differences: 2 Albertans with Moebius Syndrome share valuable lessons It was a brave step into the spotlight for a young woman living with a condition that makes her look different, but the Calgary woman is going beyond her comfort zone to give others a lesson on how to treat people with differences. Jill Croteau reports. Kelsey Ferrill knows firsthand what it’s like not looking like most people. The 28-year-old has spent her life making ...READ MORE »