Research into the cause of Moebius syndrome has increased greatly in the last ten years. The first Moebius Syndrome Foundation Scientific Conference was held in 2007 in Bethesda, Maryland. The conference was funded by the Friends of NIDCR, the Moebius Syndrome Foundation and a grant from four institutes of the National Institutes of Health, including the National Institute of Neurological Disorders and Stroke (NINDS), the NIH Office of Rare Diseases (ORD), and the National Institute of Dental and Craniofacial Research (NIDCR). This initial conference brought together researchers from 9 countries around the world and was the catalyst for the collaborative work which expands yearly.
The Scientific Symposium held in July of 2014 featured the work of more than 15 researchers and their associates. A collaborative NIH U1 grant to study Moebius syndrome and related facial weakness disorders was discussed at the Symposium and at the Moebius Syndrome Foundation Conference that year. Under the guidance of principal investigators Irini Manoli, PhD, MD; Ethylin Wang Jabs, MD; and Elizabeth Engle, MD, twenty four individuals with Moebius syndrome and their families will be added to the study yearly, for 3 years, in the quest to determine which gene(s) are responsible for this rare syndrome/sequence.
The Moebius Syndrome Foundation is honored to work with these esteemed researchers.