Kathleen Bogart and Tara Lewis wrote a fantastic blog post for NACE (National Association of Colleges and Employers about how employers can reduce bias toward people facial paralysis, especially now since virtual interviews are the norm. We are hoping to bring more awareness to employers as it relates to hiring people with Moebius syndrome and other conditions that cause facial paralysis. Stay tuned in the coming weeks for another post focused on strategies people with Moebius can use for successful interviews! READ MORE »

The Moebius Syndrome Foundation mourns the passing of our friend, Dr. James Partridge. Dr. Partridge was a giant in the movement for facial equality, and helped the Moebius Syndrome Foundation become a part of the Face Equality International alliance. He was a keynote speaker at two of our previous conferences, and a friend and mentor to many within the Moebius community. Our sincerest condolences go out to his family, friends, and partners within Face Equality International. We will miss him greatly, ...READ MORE »

James Partridge was eighteen when he was severely facially burned. FACE IT tells how he found a way to live happily with his distinctive face in our face-perfect society, turned the lessons he’d learned into practical empowerment for others with facial disfigurements, and launched the global campaign for ‘face equality’ for everyone, whatever their face looks like. FACE IT looks prejudice in the eye and refuses to blink. Ordering FACE IT directly

This week marks the second International Face Equality Week. Global charities, from Taiwan to South Africa through North and Latin America will join forces to continue campaigning for a better, fairer world for people with facial differences. Despite the unprecedented times stemming from the Covid-19 pandemic, 35 member NGOs of the alliance, Face Equality International, have decided to push forward with a week-long digital campaign. They will highlight the issues and prejudices people with facial differences experience, including health inequalities, ...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 »

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 »