Monica Woodall, Board Director at the Moebius Syndrome Foundation, and her daughter, Madison, were recently featured in a news article. They discuss some of the challenges experienced by Madison, as well as some of her personal accomplishments.
Author Archives: Jenny Whitman
The Moebius Syndrome Foundation, American Cleft Palate Craniofacial Association, Children’s Craniofacial Association, Face Equality International, myFace, the Kindness is Everything team, and other organizations worldwide will be raising awareness and celebrating the people and families affected by Moebius syndrome and similar craniofacial conditions with a “Kindness is Everything” campaign from December through January 24, 2023. Read the full press release here.
The Moebius Syndrome Foundation hosted its 15th national conference and 8th Research Symposium on July 14-17, 2022, at the Atlanta Airport Marriott located in Atlanta, Georgia. The event attracted over 300 attendees worldwide, over 100 of whom have Moebius syndrome. The long weekend was packed with educational and entertaining breakout sessions, free research and medical consultation evaluations, a talent show and dance, outside excursions, and two keynote addresses presented by David Garcia, Ph.D., and Rick Guidotti with Positive Exposure. The Moebius Syndrome ...READ MORE »
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.
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.