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 2019 the Foundation has provided $1,062,243 in research funding for 6 Research Symposiums (2007, 2010, 2012, 2014, 2016 & 2018) as well as numerous grants to researchers.
Grants funded 2005 – 2019:
- Ethylin Wang Jabs, MD; Johns Hopkins School of Medicine: ‘Genetics of Moebius Syndrome’ $26,500
- Ethylin Wang Jabs, MD; Mt. Sinai School of Medicine: ‘Genetics of Moebius Syndrome’ $26,500
- Ethylin Wang Jabs, MD; Mt. Sinai School of Medicine: ‘Genetic Studies of Moebius Syndrome’ $40,000
- Wendy Roberts, MD; Hospital for Sick Children; ‘A Genetic and Phenotypic Understanding of Moebius syndrome’ $34,000
- 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
- Roxana Wexberg, MD; Hospital for Sick Children; ‘Genome-wide Epigenetic Profiling in Moebius Syndrome; $16,265
- Sara Rosenfeld Johnson, Talk Tools, LLC; ‘Effectiveness of Oral-Motor Therapy for Children with Moebius Syndrome’ $55,030
- Elizabeth Engle, MD, Boston Children’s Hospital; ‘Diagnostic Distinctions and Genetic Analysis of Patients Diagnosed with Moebius Syndrome’ $27,000
- Alan Tenney, PhD, Boston Children’s Hospital; Senior Postdoctoral Fellow, Engle Lab; ‘Facial Motor Neuron and Axon Development’ $100,000
- Irini Manoli, PhD, MD, National Institutes of Health; ‘Multidisciplinary Phenotyping of Moebius syndrome and Other Congenital Facial Weakness Disorders’ $150,000
- Gregory Borschel, MD and Ronald Zuker, MD, Hospital for Sick Children; ‘Examining the Long Term Outcomes of Facial Reanimation in Young Adults with Moebius Syndrome’ $124,000
- Bryn Webb, MD, Mt. Sinai School of Medicine; ‘Determining Genetic Etiologies of Facial Nerve Maldevelopment’ $160,000
- Zhang Thomas Zhongyang, PhD, Mt. Sinai School of Medicine; ‘Genetic and Environmental Factors in Moebius Syndrome and Related Disorders’ $80,000 ($80,000 due in 2020)
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.
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 expands yearly.
The Scientific Symposium held in July of 2018 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. The Moebius Syndrome Foundation is honored to work with these esteemed researchers.
The next Scientific Symposium will be held in July 2020