PGRCL Sick kids, Toronto, Canada
Dr. Hernan Gonorazky is a staff neurologist at the Hospital for Sick Children since 2019. He is the neuromuscular fellowship program director of that institution. He currently is the co-director of the Spinal muscular Atrophy program at Sickkids and has dedicated much of his effort to spread the education around neuromuscular disorders.
Maria Soledad Monges
HOSPITAL J.P. GARRAHAN, BUENOS AIRES, Argentina
Dr. Soledad Monges is a pediatrician specializing in Child Neurology. Since 2006 she is a staff doctor of the Neurology Service of the Pediatric Hospital “Prof. Dr. Juan P. Garrahan ”and as of 2020 she is the head of the service's clinics, with partial dedication to the care of patients with neuromuscular disease. Since 2008 he has coordinated a care, teaching and research program for patients with neuromuscular diseases. Among her teaching activities, the following stand out: deputy director of the pediatric neurology specialist career - Hospital Garrahan academic unit, awarded by the UBA board of directors and director of the scholarship for the training of various pediatric doctors in the interdisciplinary management of patients with Neuromuscular Diseases. at the Garrahan Hospital. Additionally, she has participated as coordinator in multiple workshops and conferences aimed at different aspects of the diagnosis, management and treatment of patients with muscle diseases. She has 30 published works, with international collaborators, as well as more than 50 research works presented in poster form and publications in the framework of the most important congresses of Child Neurology, national and international; many of which have been awarded. Dr. Monges also stands out as principal investigator in research work related to diagnosis, treatment and natural evolution of pathologies such as Duchenne Muscular Dystrophy, Spinal Atrophy and Guillan Barré Syndrome.
McGill Unversity, Montreal, Canada
Attending Staff Pediatric Neurologist, Montreal Children's Hospital; Medicine, Pediatrics, Division of Pediatric Neurology; Director, Division of Pediatric Neurology, Montreal Children’s Hospital.
Hôpital Raymond Poincaré, Garches, France
Susana Quijano-Roy is a Child Neurologist at the Department of Paediatric Neurology & ICU at Raymond Poincaré Hospital in Garches, France. She is Full Professor of Paediatric Neurology at the University of Versailles-Saint-Quentin-en-Yvelines (UVSQ) in Versailles and directs the Garches Neuromuscular Reference Centre since 2016. Pr. Quijano-Roy received her MD in Madrid, Spain in 1992, where she subsequently specialized in Child Neurology in 1997. She then moved to the Institute of Myology in Paris to undertake an international specialization in neuromuscular disorders, where she was awarded a Diploma of Myology in 1999. Then, in 2000, she completed a fellowship in electromyography (EMG) and neuromuscular medicine at Harvard and Tufts University, Boston, under the tutelage of Professor Basil Darras of the Boston Children’s Hospital. She returned to France in 2001 to join the Department of Paediatric Neurology at Raymond Poincaré Hospital in Garches. Here she developed the French Clinical Research Network on congenital muscular dystrophies (CMDs), for which she was awarded a European PhD cum laude in 2004. She has chaired various international expert groups on infantile neuromuscular disorders at the European Neuromuscular Center (ENMC) and within the COST-Action programs (myoimaging BM1304 https://myo-mri.eu/ from 2013 to 2017). She was appointed Full Professor of Paediatric Neurology at UVSQ in 2016, and is currently Head of the Paediatric Neuromuscular Unit at Raymond Poincaré Hospital. Since 2017, she coordinates the Garches Neuromuscular Reference Centre consortium for the Euro-NMD ERN (European Reference Network on Rare Neuromuscular Diseases). Professor Quijano-Roy’s clinical interests include early-onset neuromuscular disorders, such as CMDs, spinal muscular atrophy (SMA), arthrogrypotic and congenital myasthenic syndromes. She has multiple publications in phenotype–genotype correlations, description of new genes, clinical management including spinal, respiratory and motor outcome measures, paediatric electromyography, and muscle imaging. Her current research focuses on new therapies and registries, in particular for SMA, CMDs, and myopathy associated with thymidine kinase 2 mitochondrial DNA depletion syndrome. She is also actively investigating the use of whole-body imaging for diagnosis and follow-up of hereditary myopathies, including metabolic myopathies.
Andoni J. Urtizberea
, Montlignon, France
J. Andoni URTIZBEREA, (MD, MSc), aged 62, is a French physician trained in Paris University (1983-1987) and certified both in paediatrics and PMR (physical medicine and rehabilitation). After graduating in parallel from the Institut d’Etudes Politiques de Paris in 1987, he served many years as Medical Director of the AFM-Telethon and then as General Delegate of the Institut de Myologie of Paris (1993-2000). As Scientific Director of the European Neuromuscular Center in the Netherlands and together with AFM’s support (ENMC, 1999-2005), he contributed to the establishment of many worldwide networks in myology, an emerging discipline dedicated to muscle and related disorders (Duchenne muscular dystrophy, spinal muscular atrophy, Limb Girdle Muscular Dystrophies among many others). He served until December 2019 as a part-time clinical myologist in Hendaye, France (APHP) and as deputy coordinator of the French Neuromuscular Network (FILNEMUS) in Marseilles. Over the past twenty years, he headed various worldwide educational events dedicated to myology (in France, Russia, Latin America and, more recently in the Middle-East). He is a regular visiting professor in various countries and a consultant for many pharma involved in the field. Ideally located at the intersection of industry, patient advocacy groups and academia, his main objective is to raise more awareness about these rare conditions notably in emerging countries and more specifically in the context of novel cutting-edge therapies. Dr. Urtizberea knows quite well the Middle-East, the Indian sub-continent, Russia and Latin America. More recently (2016), and together with Prof. André Megarbané (Beirut, Lebanon), he co-founded ‘Maladies Orphelines Sans Frontières’ (MOSF), an NGO dedicated to humanitarian relief in the field of rare diseases.