The Moebius Syndrome Foundation is committed to funding research into the cause of Moebius syndrome and its associated conditions, per the mission statement. As of 2021 the Foundation has provided $1,336,243.02 in research funding for numerous research grants and 6 Research Symposiums (2007, 2010, 2012, 2014, 2016 & 2018).
Funding priorities of the Moebius Syndrome Foundation:
- To advance the diagnosis, treatment, and/or quality of life of people with Moebius syndrome and its associated conditions.
- To promote sustainable and comprehensive programs of research focused on Moebius syndrome by providing “seed funds” for larger research programs and grant submissions to larger funding organizations.
Please contact firstname.lastname@example.org with any questions.
Grants funded 2005 – 2021:
- 2021: Jessica Dietch,PhD, Oregon State University: ‘Sleep Health of Children and Adults with Moebius Syndrome’ $30,000
- 2020: Kathleen Bogart, PhD, Oregon State University: ‘Disclosing Moebius Syndrome and Other Facial Differences’ $24,344
- 2020: Gregory Borschel, MD Riley Hospital For Children: ‘ Surgical treatment to enhance dynamic eyelid closure in patients with Moebius syndrome’ $210,000
- 2019 : Zhongyang Thomas Zhang, PhD, Mt. Sinai School of Medicine: ‘Genetic and Environmental Factors in Moebius Syndrome and Related Disorders’ $160,000
- 2018: Bryn Webb, MD, Mt. Sinai School of Medicine: ‘Determining Genetic Etiologies of Facial Nerve Maldevelopment’ $160,000
- 2016: Alan Tenney, PhD, Boston Children’s Hospital, Engle Lab: ‘Facial Motor Neuron and Axon Development’ $100,000
- 2016: Irini Manoli, PhD, MD, National Institutes of Health: ‘Multidisciplinary Phenotyping of Moebius syndrome and Other Congenital Facial Weakness Disorders’ $150,000
- 2015: G. Borschel, MD & R. Zuker, MD, Hospital for Sick Children: ‘Surgical treatment to enhance dynamic eyelid closure in patients with Moebius syndrome’ $124,000
- 2012: Elizabeth Engle, MD, Boston Children’s Hospital: ‘Diagnostic Distinctions and Genetic Analysis of Patients Diagnosed with Moebius Syndrome’ $27,000
- 2012: Wendy Roberts, MD; Hospital for Sick Children: ‘Pilot Service Delivery Model for Early Detection and Intervention for Risk Markers of Social Communication Disorders in Very Young Children with Moebius Syndrome’ $49,400
- 2012: Roxana Wexberg, MD; Hospital for Sick Children: ‘Genome-wide Epigenetic Profiling in Moebius Syndrome $16,265
- 2011: Ethylin Wang Jabs, MD; Mt. Sinai School of Medicine: ‘Genetic Studies of Moebius Syndrome’ $40,000
- 2008: Ethylin Wang Jabs, MD; Mt. Sinai School of Medicine: ‘Genetics of Moebius Syndrome’ $26,500
- 2005: Sara Rosenfeld Johnson, Talk Tools, LLC: ‘Effectiveness of Oral-Motor Therapy for Children with Moebius Syndrome’ $55,030
- 2005: Wendy Roberts, MD; Hospital for Sick Children: ‘A Genetic and Phenotypic Understanding of Moebius syndrome’ $34,000
- 2005: Ethylin Wang Jabs, MD, Johns Hopkins School of Medicine: ‘Genetics of Moebius Syndrome’ $26,500
Moebius Syndrome Foundation Scientific Conference
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 continues to expand.