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 »

Media Release Embargo 0001 Wednesday 5th February 2020 Media urged to take care with language, tone and imagery when covering disfigurement A new International Media Standard on Disfigurement has been launched today by Face Equality International, the global alliance representing people with facial disfigurements. Formed 12 months ago, Face Equality International’s first major priority as defined by its 33 NGO members was to produce internationally-applicable standards for the media and broadcasters. The new Standard is designed both to guide best practice in reporting on ...READ MORE »

The largest study of facial paralysis finds it is more stigmatized than other neurological conditions. This stigma leads to high levels of anxiety and depression, especially for people with acquired FP. Thank you Moebius Syndrome Foundation Scientific Advisory Board Member,     Kathleen Bogart, Ph.D.  for this important research. Check out the results here: https://liberalarts.oregonstate.edu/sites/liberalarts.oregonstate.edu/files/facial_paralysis_social-emotional_survey_results-200103_01.pdf

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 »

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 »