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