The Moebius Syndrome Foundation regretfully announces that its 14th national conference and scientific research symposium scheduled to be held in Minneapolis, Minnesota on July 22-25, 2021, is cancelled. Please read here for more information.
Moebius syndrome News
We are excited to announce a new video that brings awareness to the Moebius Syndrome Foundation (MSF). We hope it reaches far and wide and helps others learn more about Moebius syndrome and how the MSF can help support families and individuals affected by it. We are so grateful for our generous donors and advocates over the years that have helped us to fulfill our mission and improve the lives of so many within the Moebius community. We’ve come a ...READ MORE »
Kathleen Bogart, Ph.D., is an Associate Professor of Psychology at Oregon State University. Her research focuses on the psychosocial implications of living with disability, rare disorders, or facial differences such as Moebius syndrome. Check out this informative article she wrote about Moebius syndrome! https://www.psychologytoday.com/us/blog/disability-is-diversity/202101/7-things-understand-moebius-syndrome-awareness-day
Press Release – Moebius Syndrome Awareness Day 2021 The Many Faces Of Moebius Syndrome (www.mfoms.org), the Moebius Syndrome Foundation (www.moebiussyndrome.org), the Moebius Syndrome Research Trust (www.moebiusresearchtrust.org), the Children’s Craniofacial Association (www.ccakids.com), and Face Equality International (www.faceequalityinternational.org), are proud to announce the 11th annual Moebius Syndrome Awareness Day which will be celebrated worldwide on Sunday the 24th of January, 2021. Moebius Syndrome is an extremely rare congenital neurological disorder which is characterized by facial paralysis and the inability to move the eyes from side ...READ MORE »
Here is an explanation put together by Zineb Aourid, featuring Dr. Ronald Zuker, MD. This would be great to share with others not familiar with Moebius syndrome. Watch this informative video here.
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 »