The Moebius Syndrome Foundation is currently conducting research into sleeping disorders, as well as a psychological study about the experiences of informing people about a facial difference. We invite the Moebius community to help make these studies successful by participating in online surveys for each topic. For more information, please review the following flyers: Facial Difference Survey and Sleep Health Study.
Author Archives: Jenny Whitman
Now through June 1, 2022, applications for ‘Grant Proposals to Study Moebius Syndrome and Sleep Disorders’ are being accepted by the Moebius Syndrome Foundation. Please visit this page for more information about this grant opportunity.
The Washington Family Magazine recently interviewed Jacob Licht and Rebecca Maher, members of the Moebius Syndrome Foundation Executive Committee, and wrote an article entitled Smiling on the Inside: Living with Moebius Syndrome. You can read the full article here.
The Moebius Syndrome Foundation has been awarded the 2021 Platinum Seal, which shows the highest level of transparency and integrity in a non-profit. You can see our updated non-profit profile on Candid at: here.
The Moebius Syndrome Foundation has once again joined with the Many Faces of Moebius Syndrome, along with Face Equality International, and Children’s Craniofacial Association, in issuing a combined press release to raise awareness in the media about Moebius Syndrome Awareness Day in 2022. Press Release
The Moebius Syndrome Foundation is pleased to announce that Gregory Osborne, DDS has joined our Scientific Advisory Board. Dr. Osborne has participated in many past national conferences as a presenter and most recently supported our virtual educational webinar series. He has a daughter with Moebius syndrome and practices in San Antonio, Texas. Please visit our Scientific Advisory Board page to read more about Dr. Osborne.
The Moebius Syndrome Foundation is pleased to announce the addition of four new members who were recently elected to its Board of Directors. Joining the Board are Destiny Bachman, Jon Fisher, Kathrn Kraus, and KiOwana Phillips. In addition, Steven Maldonado was elected to serve as Vice President. Read the full press release here.
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 »
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 »