DNA double helix graphic

Sameple Name

Sample content area

Sameple Name

Sample content area

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 MDAssociate 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 MagalhaesMD, 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