Inaugural research symposium
AGENDA: 2007 Moebius Syndrome Foundation Research Symposium
Day 1, April 24, Morning
Welcome and Introductions
- Vicki McCarrell – Welcome
- All Introductions
Keynote Address:
- George Padberg – Diagnostic criteria of Moebius syndrome
Plenary Session 1: Manifestation
Panel Discussion including:
- George Padberg
- Phenotypes – Kerstin Strömland
- Epidemiology of Moebius syndrome – Terri Beaty
- Behavioral, Cognitive and Physical Features – Wendy Roberts/Susan Bryson
- Non neurological overview of Moebius syndrome – Richard Redett
Group discussion focusing on:
- Current state of knowledge across Neurology, Ophthalmology, Dentistry and other affected disciplines: What’s known, what’s needed
- Diagnostic Criteria: What’s known, what’s needed
Day 1, Afternoon
Plenary Session 2: Etiology
Each of these talks will have two purposes: 1) to review the current state of knowledge and research in Moebius syndrome and 2) to highlight gaps in knowledge and outline research priorities for bridging the gaps.
- Genetic – genetic basis of disease, status of DNA tissue bank (Ethylin Wang Jabs/Steven Scherer)
- Neurobiology and Related Disorders (Elizabeth Engle)
- Environmental and Teratological factors – hypoxic and vascular events; Misoprostol and other known teratogenic agents (Liana Ventura)
- Developmental Neurobiology and Relevant Animal Models (Nick Gutowski/Sarah Guthrie)
Group discussion focusing on:
- Ongoing and future research
- Research prioritization
Day 2, April 25, Morning
Plenary Session 3: Treatment and Rehabilitation
Plenary 3 will be clinically-focused, and will have three goals: 1) to review current clinical approaches across disciplines, 2) to explore additional treatment alternatives, and 3) to discuss the research required to validate current and proposed treatment methodologies.
- Plastic and Reconstructive Surgery (Ronald M. Zuker/Giorgio la Scala)
- Neurological (nerve regeneration, neuromuscular retraining, electronic stimulation) (Richard Redett/Luis Carlos Nunez Lopez)
- Dentistry (Marina Magalhaes)
- Psychiatry (Karen Schmidt)
- Rehabilitative Therapies (oral, speech, physical, vision, other) (Sara Rosenfeld-Johnson)
- Orthopedics (M. dePellegrin)
- Ophthalmology Panel Discussion (Marilyn Miller, Arturo Carta, David Taylor, Liana Ventura)
Group discussion focusing on:
- Opportunities in applied clinical research
- Un-validated and under-validated therapies: evaluating current clinical practices and recommendations for future clinical practice.
Day 2, Afternoon
Plenary Session 4:
- Presentation and discussion of any findings and recommendations from Breakout Sessions
- NIH Panel – Reactions and Impressions
- Establish research priorities with emphasis on interdisciplinary nature of Moebius syndrome
Confirmed Speakers:
- Terri Beaty PhD, Deputy Chair and Professor, Department of Epidemiology Bloomberg School of Public Health, Johns Hopkins University
- Arturo Carta, MD, PhD, Researcher and Assistant Professor, Neuro-Ophthalmology Unit, Ophthalmology Section, Head and Neck Department, University of Parma, Italy
- Maurizio De Pellegrin, MD, Clinics Ortopedica, Milano, Italy
- Elizabeth Engle MD, Associate Professor of Neurology, Boston Children’s Hospital, Harvard Medical School
- Sarah Guthrie, MD, Professor of Developmental Neurobiology, Kings College, London
- Nick Gutowski, MD, Department of Neurology, Royal Devon and Exeter Hospital, Exeter, United Kingdom
- Giorgio La Scala, MD, Médecin adjoint du chef de Service, Service de Chirurgie Pédiatrique, Hôpital des Enfants – Hôpitaux Universitaires de Genève
- Marina Magalhaes, MD, Faculdade de Odontologia, Universidade de Sao Paulo
- Maria Joaquina Marques-Dias, MD, PhD, Associate Professor of Neurology, University of
Sao Paulo - Marilyn Miller, MD, Professor, University of Illinois, Chicago, Department of Ophthalmology
- Luis Carlos Nunez-Lopez, MD, Clinical Child Neurology, Bucaramanga, Colombia
- George Padberg MD, PhD, Professor and Head, Department of Neurology, University Medical Centre Nijmegen, The Netherlands
- Richard Redett, MD, Assistant Professor, Division of Plastic and Reconstructive Surgery, Pediatric Plastic Surgery, Johns Hopkins Hospital
- Wendy Roberts, MD, FRCPC, Developmental Pediatrician, Professor of Pediatrics, Co Director, Autism Research Unit, University of Toronto, Hospital for Sick Children
- Sara Rosenfeld-Johnson, MS CCC/SLP, Speech and Language Pathologist, Oral-Motor/Feeding/Speech Specialist, Sara R. Johnson and Associates
- Steven Scherer PhD , Senior Scientist, Genetics and Genomic Biology, Director, The Centre for Applied Genomics, Associate Chief, Research Institute, Hospital for Sick Children, Toronto, ON
- Karen L. Schmidt, PhD, Assistant Professor, University of Pittsburgh Department of Psychiatry, University of Pittsburgh
- Kerstin Stromland MD, PhD, Professor of Ophthalmology, The Sahlgrenska Academy at Goteborg University, Institute of Clinical Neuroscience, The Queen Silvia Children’s Hospital, Goteborg, Sweden
- David Taylor FRCOphth FRCPCH DSc (Med), Professor of Pediatric Ophthalmology, Great Ormond Street Hospital NHS Trust, London
- Liana Ventura, MD, Pediatric Ophthalmologist, Recife, Brazil
- Ethylin Wang Jabs, MD, Johns Hopkins University, Director, Center for Craniofacial Development and Disorders
- Ronald M. Zuker, MD, FRCSC, FACS, FAAP, Division of Plastic Surgery, The Hospital for Sick Children, Toronto
Confirmed Attendees:
- Jeanne Amiel, MD, Geneticienne, Hospital Necker Enfants Malades, Paris
- Susan Chang MD, DDS, FDSRCS
- Jonathan Cole, DM, FRCP, Poole Hospital, Poole, England
- Irene Drmic, Hospital for Sick Children, Toronto
- Tessa A. Hadlock MD, Director, Facial Nerve Center, Massachusetts Eye and Ear Infirmary, Harvard Medical School
- Shelly Mitchell, Hospital for Sick Children, Toronto
- Jonathan Ponesse, MD, Neurology, Hospital for Sick Children, Toronto
- Rhonda Robert, PhD, MD Anderson Cancer Center, Houston
- Hans van Bokhoven, MD, Research Coordinator, Department of Human Genetics 855, Radboud University Nijmegen Medical Center, Nijmegen, The Netherlands
- Haley Wood, Hospital for Sick Children, Toronto
CONTACT US
844-MOEBIUS
(844-663-2487)
Moebius Syndrome Foundation
1312 17th Street #976
Denver, Colorado 80202
info@moebiussyndrome.org