Portal de Periódicos da CAPES

Victor(iou)’s myologists: snapshots of a legacy

2021; Elsevier BV; Volume: 31; Issue: 10 Linguagem: Inglês

10.1016/j.nmd.2021.07.010

1873-2364

Gianina Ravenscroft, Edoardo Malfatti,

Muscle Physiology and Disorders

When I learnt about the special issue of Neuromuscular Disorders to celebrate Victor's 90th Birthday, I reflected on everything Victor and the WMS has done for the field of neuromuscular disorders and for the researchers & trainees: the sense of community, the collaborations, the generous travel fellowships and prizes. Much of this was gleaned from my two copies of Victor's memoir, one purchased, and one later awarded to me in 2016; also attendance of six WMS congresses. I then discussed the idea of a tribute to Victor with my mentor Nigel Laing - he thought it was a lovely idea. I then emailed my dear colleague and fellow Young Myologist – Edoardo Malfatti about co-writing a piece with me, his almost instantaneous reply was “Excellent idea, I am in!”. We duly emailed Jane Miller and Prof Anders Oldfors to “pitch” this idea and they both enthusiastically supported this submission. Emails were then circulated amongst the Young Myologists, a Google Form devised, and we were away. It was wonderful seeing all the fond memories, WMS musings and highlights come in. Below are our collective efforts to capture the essence of WMS and Victor's legacy from the Young Myologists’ perspectives. The World Muscle Society (WMS) was established by Profs Victor Dubowitz, Luciano Merlini and Giovanni Nigro in 1995 [[1]Dubowitz V. A short history of the World Muscle Society.Neuromuscul Disord. 2005; 15: 642-647Abstract Full Text Full Text PDF Scopus (4) Google Scholar]. This was in response to an observation that there was an inherent need for an annual multidisciplinary meeting for the neuromuscular field and for a society to adopt Neuromuscular Disorders. The credo of the society was: “an international multidisciplinary society for promotion and dissemination of knowledge in the neuromuscular field for the benefit of patients”. It is a credit to Victor and his colleagues’ determination and foresight that we have the wonderful World Muscle Society – a family of neuromuscular disease researchers and clinicians. Special mention must be paid to Fernando Tomé for all his efforts in the early years of the WMS, especially leading the program committee for the congresses. The founding ideologies for the Society were (1) inclusivity, with the meeting encouraging registrants to participate in the entire conference program and inclusion of the social events in the conference registration to foster this culture and (2) a conference within reach of trainees. A firm objective of the WMS was that the conference would be “directed at the active young researchers and not the established icons” [[2]Dubowitz V. Ramblings of a Peripatetic Paediatrician. The Memoir Club, 2005Google Scholar]. In many ways, the founding principles of the WMS were incredibly progressive for the time, with a focus on inclusion and trainees (e.g. early-mid career researchers [EMCRs]). This progressive spirit has been perpetrated through years, with growing incentive for younger researchers and for colleagues from low- and medium-income countries to join the society and the congress. These founding principles continue to guide the society and contribute to the “family” spirit of the society and meetings. Prof van der Maarel: “One of the fond memories I have of the WMS is its small size. As a young scientist in large meetings you are typically lost, ending up at your poster with, when you are lucky, one or two visitors that are interested in what you are doing. The poster walk, or any alternative that I have seen at the WMS, is brilliant. It enthuses young scientists early in their career.” The World Muscle Society is a family of myologists; a group of kindred spirits, highly collaborative clinician and basic science researchers focused on understanding neuromuscular diseases, developing therapies, and treating and caring for patients with neuromuscular diseases. Each year at the conclusion of the congress several awards are made to WMS trainees for their poster and oral presentations (Fig. 1a), including awards for best presentation by a “first-timer”. In 2001 at the WMS meeting in Snowbird, Prof Dubowitz gave the Society its nickname of the “Triple E Society: Education, Enjoyment and Excitement” [[1]Dubowitz V. A short history of the World Muscle Society.Neuromuscul Disord. 2005; 15: 642-647Abstract Full Text Full Text PDF Scopus (4) Google Scholar]. Each conference has a healthy measure of each, for example: visiting the Kruger National Park (2000), trips to Iguazu Falls (Brazil, 2005) and Mount Aso during the Kumamoto meeting (2010), and touring Alhambra in Granada (2016). In 2020, the 25th Anniversary of the World Muscle Society, the virtual quiz was also very much a highlight and fulfilled the “triple E” mantra of the society. In 2005, Victor published his memoir “Ramblings of a peripatetic paediatrician” and auctioned the first unbound copy of his memoir at the networking dinner of the WMS Congress in Brazil. This launched the President's Prize Fund and in 2005 the World Muscle Society awarded the inaugural President's Young Myologist of the Year award [[2]Dubowitz V. Ramblings of a Peripatetic Paediatrician. The Memoir Club, 2005Google Scholar]. There have been 16 awards with seven made to female myologists. Awardees represent all facets of neuromuscular disease research: gene discovery, disease mechanisms, pathobiology, diagnostics, clinical measurements, animal models, preclinical studies, therapies and clinical trials. Awardees stem from 14 cities across nine countries and four continents. The Young Myologists have many fond memories of receiving their awards including Victor most often remarking on handing over of his memoir “you are not obliged to read it”. Johann Böhm recalls (Fig. 1b): “Happy it is you! This is what Victor told me in 2017. Reminds me of Rainier III, the former prince of Monaco. Prince Rainer III always used these exact words to congratulate the winner of the Monaco Grand Prix – no matter who won.” Having World Muscle Society Young Myologist of the Year on their CV has obviously been of benefit to the recipients in terms of winning funding including fellowships, project grants, academic promotions, and tenure. The Young Myologists of the Year combined have nearly 1500 publications, with 170 joint publications, with up to four Young Myologists of the Year collaborating on some studies. Many of the joint publications have arisen from making connections at World Muscle Society meetings. The WMS meetings have therefore built the neuromuscular disease family in subsequent generations, resulting in improved outcomes for patients. WMS will continue to be guided by its founding principles, with increasing input from the next generations of myologists. This includes no-longer-quite-so-young Myologists of the Year Laurent Servais and James Dowling as current members of the Executive Board. In addition, many Young Myologists of the Year have contributed to the process of the prize winner selection by becoming a member of the prize selection committee. In this way, the committee remains a consist mix of very established experts and emerging, talented researchers and clinicians. Victor and the WMS have supported young researchers and trainees hugely in other ways. Victor was instrumental in striking an arrangement with Elsevier, the publisher of Neuromuscular Disorders, to support the society. WMS established an Education Fund with the royalties it receives from Elsevier. In the first year, 2003, WMS provided 12 travel fellowships valued at 500 euros. In 2017, 93 travel fellowships were awarded. To date, the WMS has awarded 840 travel fellowships to a value of >500,000 euros to support EMCRs and trainees to participate at WMS Congresses. The Executive Board of the WMS continues to work hard to continue and improve this tradition of inclusion. Recent changes include a reduced student membership fee and membership grants for individuals where the membership fee is a barrier to them joining the society. The 25th international congress of the World Muscle Society in 2020 occurred virtually due to the COVID-19 pandemic. Due to the financial health of the WMS, registrations for the teaching course and meeting were free of charge. Each year, the teaching course is attended by ∼40 trainees, in 2020 the virtual course was attended by 1761 trainees. More than 2900 individuals participated in the 2020 virtual meeting with attendees hailing from 76 countries. Thirty countries had registrants for the first time at the 2020 virtual WMS meeting (Fig. 1c), thus neuromuscular disease research, training and education was shared on a truly global scale. In the 1960s’, Lilly, Victor's beloved wife and paediatrician, alongside Victor developed an assessment tool “The Dubowitz Score” to determine the gestational age of newborns, which could discern premature babies from mature but undernourished babies [[3]Dubowitz L.M. Dubowitz V. Goldberg C. Clinical assessment of gestational age in the newborn infant.J Pediatr. 1970; 77: 1-10Abstract Full Text PDF PubMed Scopus (1967) Google Scholar]. This tool was particularly useful in underdeveloped countries where malnutrition and low birth weight were almost the norm. This tool was also appreciated in communities where mothers rarely knew the date of their last menstrual cycle. Lilly and Victor took this tool to remote corners of the globe including New Guinea and refugee camps on the Burmese border in northern Thailand. Thus, the Dubowitz legacy has come full circle, taking neuromuscular disease research to all corners of the globe through the free-of-charge virtual meeting. WMS is living up to its original credo, with a commitment to service to a global patient population; now led by a multitude of young myologists who got a start in the WMS and with many more to come. Happy Birthday Mr Lifetime Honorary President, the neuromuscular disease field is forever in your debt. The future of the field is bright due to the legacy you have created through the World Muscle Society and through all you and your colleagues have done for trainees and EMCRs. The authors have no conflicts to declare. Many thanks to Prof Nigel Laing, Prof Haluk Topaloglu and Jane Miller for critical insights and comments on this article. Silvère van der Maarel3, Haiyan Zhou4, Duygu Selcen5, Martin Krahn6, James Dowling7, Satomi Mitsuhashi8, Richard Lemmers3, Kristen J Nowak9, Laurent Servais10,11, Nicol Voermans12, Johann Böhm13, Sandra Donkervoort14, Marco Savarese15, Payam Mohassel14 3Department of Human Genetics, Leiden University Medical Center, Leiden, The Netherlands. 4The Dubowitz Neuromuscular centre, Great Ormond Street Institute of Child Health, University College London, London, United Kingdom. 5Department of Neurology, Mayo Clinic, Rochester, Minnesota, USA. 6Aix Marseille Univ, INSERM, MMG, U 1251, Marseille, France. 7Program of Genetic and Genome Biology, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada. 8Department of Genomic Function and Diversity, Tokyo Medical and Dental University, Tokyo, Japan. 9Office of Population Health Genomics, Public and Aboriginal Health Division, Department of Health, Government of Western Australia, Perth, WA, Australia. 10MDUK Oxford Neuromuscular Center, Department of Paediatrics, University of Oxford, Oxford United Kingdom. 11Division of Child Neurology Reference Center for Neuromuscular Disease, centre Hospitalier Régional de Références des Maladies Neuromusculaires, Department of Pediatrics, University Hospital Liège & University of La Citadelle, Liège, Belgium. 12Department of Neurology, Donders Institute for Brain, Cognition and Behavior, Radboud University Medical Center, Nijmegen, The Netherlands. 13Institut de Génétique et de Biologie Moléculaire et Cellulaire (IGBMC), Inserm U 1258, CNRS UMR 7104, Université de Strasbourg, France. 14Neuromuscular and Neurogenetic Disorders of Childhood Section, National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, Maryland, USA. 15Folkhälsan Research Center & University of Helsinki, Helsinki, Finland.