4th International Symposium on Arthrogryposis

Klaus Dieterich, MD, PhD is an associated Professor of Medical Genetics at the University and Hospital of Grenoble Alpes in France. Dr. Dieterich leads a national pediatric and adult clinic for AMC at Grenoble Hospital Center in France. His research interests include the identification and characterization of molecular, clinical, functional and imaging diagnosis of entities with AMC and fetal akinesia. He has coordinated the French guidelines for diagnosis and care for AMC released in 2021, initiated a patient education program with his group and published over 20 research articles in the field of AMC.

Dr. Lisa V Wagner DHS, OTR/L received her OT degree from the Medical University of South Carolina and her doctorate from the University of Indianapolis. Working for Shriners Hospitals for Children for the past 33 years has allowed Lisa to participate in various research projects resulting in peer-review articles, book chapter and the ability to speak nationally and internationally. She has co-developed three distinct outcome measures including the UBET, SHUEE and SCUES. She is a clinical instructor for the Assisting Hand Assessment. Passionate about children with AMC, she is currently collaborating on an outcome assessment for better understanding of the upper extremities in AMC and the development of rehabilitation guidelines for AMC.

Dr. Bartlomiej Kowalczyk is a pediatric orthopedic surgeon trained at the Jagiellonian University in Krakow, Poland, and obtained a PhD in 2002. He has trained at the Children's Hospital of San Diego, in Philadelphia, in Stanmore and Birmingham in the United Kingdom. He has over 31 publications, and has developed a specialty in the complex surgical treatments for children with arthrogryposis. In 2014, Bart developed a specialty center for children with arthrogryposis in University Children’s Hospital of Krakow, Poland. Up to date, more than 300 children with arthrogryposis underwent complex treatments at the Center, and over 80 patients (mostly children, occasionally adults) are treated every year with multilevel surgical corrections and reconstructions for foot, knee, hip, upper limb and spine deformities. The team incldues physiotherapy and orthopedic consultations, surgery, therapy, followed by full orthotic services including design and production of individual braces.

Dr. Ponten is a hand surgeon and a pediatric orthopaedic surgeon working at the Department of Pediatric Orthopaedic Surgery at the Karolinska University Hospital. Clinically, her main interests are cerebral palsy, arthrogryposis (AMC), limb deficiencies, spina bifida (MMC), developmental dysplasia of the hip (DDH) and trauma. Her PhD from 2004 investigated tendon transfer mechanics and properties of spastic muscle.

Emeritus Professor Hanneke, J.I.P. de Vries, gynaecologist-perinatologist is coordinator of the Amsterdam UMC (University Medical Center) for FADS (fetal akinesia deformation sequence) and AMC (arthrogryposis multiplex congenita) since its national approval in 2015. The strong multidisciplinary team leads parents of children with increased risk through pregnancy and the transitions thereafter throughout childhood. Since her Ph.D. on fetal motility in 1987 she strives for implementation of systemic fetal motor assessment as a part of the sonographic examination in fetuses at risk for FADS, AMC and other anomalies affecting motility before birth. With their team they published a care pathway on perinatal care to enhance prenatal detection of AMC; results of sonographic evaluations of fetuses at risk and outcome in two consecutive decades; research on educational aspects of motor assessments for sonographers with and without training in systematic motor assessment. The importance of collaboration with patient support groups will be illustrated by presenting two recent surveys. Various (practical) aspects will be elucidated during the pre-congress workshop and symposium.

Anna Binkiewicz-Glinska received her PhD from Gdansk Medical University (MUG) in October 2014. She has held the position of Assistant Professor in the Department of Physical Rehabilitation Medicine at MUG. She has worked as a consultant physician in physical medicine and rehabilitation in several medical institutions located in Poland, Belgium and France. Dr. Binkiewicz-Glinska has published scientific articles in leading journals and reviewed in the New England Journal of Medicine. She is a member of medical societies in Poland, the UK, Belgium, Luxembourg and France. She is also a member of the European Council of Physical Sciences and Rehabilitation Medicine (MRP).

Dr. Bonita Sawatzky, an Associate Professor of Orthopaedics, was one of the original principal investigators in 2008 of ICORD, a spinal cord research centre in Vancouver. She has worked in spinal cord injury research as a clinical biomechanist for 25 years studying primarily wheeled mobility in spinal cord injury. Dr. Bonita Sawatzky has also published the largest international outcome studies of adults with AMC and currently leads the an Adult AMC Registry which is in its 5th year of annual data collection. She has closed her biomechanics lab to become the Director of READI (Respect, Equity, Accessibility, Diversity and Inclusion) for the Department of Orthopeadics at the University of British Columbia. Key initiatives so far have been on awareness and education with department grand rounds, resident and medical student training. She is a dedicated teacher in UBC’s Faculty of Medicine, working with medical students, residents and graduate students. She encourages the patient’s voice in her own research work, inviting patients to be collaborators, co-researchers and authors.