August 1, 2021- The Moebius Syndrome Foundation welcomes Jenny Whitman as its new Executive Director. Hired in January of 2018, Jenny Whitman served in the role of Events and Programs Manager until August 1, 2o21 when she moved into the position of Executive Director. Her position is to help the Moebius Syndrome Foundation fulfill its vision and mission in providing support to individuals with Moebius syndrome and their families, promote greater awareness and understanding of Moebius syndrome, and to advocate ...READ MORE »
Moebius syndrome News
The Moebius Syndrome Foundation, the nation’s largest organization dedicated to providing information and support to individuals with Moebius syndrome, is hosting its biennial national conference on July 15-17, 2022 at the Atlanta Airport Marriott in Atlanta, Georgia. The 8th Scientific Research Symposium will be held at the same location on July 14, 2022. The purpose of the conference is to bring families and individuals affected by Moebius syndrome together for education, research, and socialization opportunities. Please visit our website often ...READ MORE »
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.
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 »