8. Marion MAIN. Physiotherapy management for children with CMT and peripheral neuropathies_English

Senior Physical Therapist, Neuromuscular Team Leader, Muscle Biopsy Therapist. Marion Main is Consultant Paediatric Physiotherapist in Children’s Neuromuscular Disorders at the Dubowitz Neuromuscular Service, Great Ormond Street Hospital (GOSH) in London. She studied physiotherapy in Newcastle and has worked in general physiotherapy including neonatal intensive care, spinal injuries and paediatric rheumatology. She has worked in neuromuscular disorders for 33 years. As well as clinical work, she is involved in clinical research, teaching physiotherapists, students and other professionals and has been associated with the development of several internationally adopted standards of care. She has been instrumental in the designing and testing of many of the assessments used by physiotherapists worldwide. The physiotherapy team at GOSH see around 1800 children with neuromuscular conditions yearly, many in specialist clinics: for Duchenne Muscular Dystrophy, Spinal Muscular Atrophy, Charcot-Marie-Tooth, Congenital Myopathy, Congenital Myasthenia, and Channelopathies along with joint respiratory clinics, spinal clinics and general orthopaedic clinics. Marion has a master’s degree in equipment design for disability, winning two national awards for her work. She works closely with other professionals and believes children should be stood from as young as possible. She has a keen interest in taping, serial casting and splinting. Marion has taught internationally and kept busy during Covid doing regular webinars for parents and children. She was awarded a Fellowship of the Association of Paediatric Chartered Physiotherapists in 2021 in recognition of her work. Great Ormond Street Hospital for Children NHS Trust - London, UK