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Institut de la Myologie

Newsletter #94 – May 2023

First Muscle Week from 1 to 7 June

On 1 June, the Muscle Conferences will mark the start of the first Muscle Week, which will be relayed throughout France to raise awareness of this major public health issue through a week of mobilisation. From 1 to 7 June, awareness-raising events organised by companies, health professionals, sports federations, schools and universities, and local authorities will take place throughout France to make everyone aware of the importance of muscle in our daily balance and how vital it is to preserve our muscle capital throughout our lives. Children, teenagers, adults, experienced sportsmen and women or week end warriors, whether you are in perfect health or need to maintain your muscles, this event will undoubtedly strengthen your knowledge!

Join the movement!

  • Discover the programme and sign up for the Muscle Conferences on 1 June at the Economic, Social and Environmental Council in Paris (in French)
  • Follow the news of the Muscle Week or get involved via the dedicated website (in French) and on social networks.

For the occasion, the Institute of Myology will open its doors on Saturday 3 June, from 10am to 5pm in Paris, at the Pitié-Salpêtrière Hospital. The programme will include an educational exhibition on muscle, fun workshops, lectures by experts, laboratory visits and discovery of our MRI, our evaluation tools, our electron microscope, strength tests, games and quizzes…

At the Institute
The Institute of Myology is proud to be a partner of the Genother Biocluster Genother is a biocluster dedicated to accelerating the development of gene therapy drugs. It is one of the five winners of the “Biocluster” call for expressions of interest under the France 2030 Plan, as announced today by the French President. Read more

Next M&M's – Muscle Monday Seminars M&M’s – Muscle Monday Seminars are organized by the Myology Centre for Research, at the Institute of Myology. They are given by videoconference. Next guest on 12 June will be Ryan Corces (USA). Read more

A look back at the 4th International Meeting on Laminopathies The 4th International Meeting on Laminopathies, held in Madrid from 9 to 12 May 2023, brought together researchers and physicians interested in these rare diseases, representatives of the pharmaceutical industry, as well as laminopathy patients and patient organisations from around the world. Read more

Introduction to research in myology at the Institute for SU medical students – Interview with Guillaume Bassez The Institute welcomed its first class of medical students for an introduction to research in the field of myology in April 2023. This week of training, which is part of the medical curriculum at Sorbonne University, was organised by Guillaume Bassez, neurologist and head of a research group in the Repeat Expansions & Myotonic Dystrophy (REDs) team. Read more

Our latest news
Role of caveolae in T-tubule formation in the muscle cell – Interview with Eline Lemerle and Stéphane Vassilopoulos Eline Lemerle completed her thesis under the supervision of Stéphane Vassilopoulos, in Marc Bitoun’s team (MCR). Her work on the formation of T-tubules in the muscle cell and more specifically on the role of caveolae, has just been published in the journal eLife. Read more

Anti-SAE autoantibodies in dermatomyositis In a retrospective observational study, researchers and clinicians described the clinical characteristics, cancer prevalence and muscle pathology of anti-SAE (anti-small ubiquitin-like modifier activating enzyme) positive DMs. Read more

Treated myasthenia can still cause significant difficulties in everyday life The international MyRealWorldMG study collects real-life data from adults with autoimmune myasthenia undergoing treatment. Each month, they answer different patient-reported outcome measures (PROM), specific or not to myasthenia: EQ-5D-5L, MG-ADL, MG-QoL-15r… Read more

Ultrasound useful to assess respiratory effort in MFM patients: a case study Myofibrillar myopathies (MFMs) are a small but fairly heterogeneous group of neuromuscular diseases characterised, at the histopathological level, by the accumulation of protein products which cause a disorganisation of the internal architecture of the muscle fibre network. Read more

Genetic analysis strategy in hereditary neuropathies French clinicians, aiming to guide the genetic diagnosis of patients with hereditary peripheral neuropathy, outlined in a review the clinical and neurophysiological aspects as well as the potential treatments of these diseases. Read more

Analysis of the largest cohort of patients with anoctaminopathy An international multicentre study reports the results of the analysis of the characteristics of 234 patients with ANO5-related myopathy (limb-girdle muscular dystrophy type R12 or LGMD R12, distal muscular dystrophy type 3 or MMD3, ANO5-related pseudometabolic myopathy and asymptomatic hyperCKemia). Read more

More breaking news
Pregnancy and neuromuscular diseases: survey results from 300 women An international study published in December 2022 analysed the pregnancy and childbirth experiences of women with neuromuscular diseases, collected via online questionnaires. Read more

Two major breakthroughs in autoimmune necrotizing myositis Autoimmune necrotizing myositis (AINM) is a recently described entity related to the deleterious effect of autoantibodies directed against an enzyme, HMG CoA reductase, most often in the context of prolonged statin exposure. Read more

Inflammatory myopathies
Spinal muscular atrophy
Duchenne & Becker muscular dystrophy
Metabolic myopathies
Myasthenia gravis
Limb-girdle muscular dystrophies
Neuromuscular diseases
Other neuromuscular diseases
In brief
AGENDA 2 June 2023 - 1st European Myasthenia Gravis Awareness Day Read more

12-16 June 2023 - AcadeMYO - Summer School of Myology - Format hybrid: online and face-to-face in Paris, France Read more

1-4 July 2023 - 9th EAN Congress – Budapest, Hungary Read more

16-21 July 2023 - XXIII International Congress of Genetics - Melbourne, Australia Read more

22-25 April 2024 - Myology 2024 - Paris, France Read more

Job opportunities The Institute of Myology is recruiting a Clinical Research Associate (M/F). Read more

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Every two months, the newsletter from the Institute of Myology informed you on developments in myology research, with a summary of the latest scientific, medical, political and community news about neuromuscular diseases. You can read our newsletter by subscribing. You can unsubscribe here.
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This newsletter is about the medical-scientific actuality of the Association Institute of Myology. It is published every two months. Chief Editor: Vincent Varlet. Editorial Board: Fabrice Chrétien; Bertrand Fontaine; Emmanuelle Guiraud; Delphine Olivier; J. Andoni Urtizberea; Vincent Varlet. Editorial staff: Anne Berthomier. Do you have any questions? Would you like to share some news? Please contact us. © 2023 - AFM - Association Institut de Myologie. ISSN 1772-9866 You are receiving this email because you have subscribed to the Association Institute of Myology’s newsletter. You no longer wish to receive our newsletter? You can unsubscribe from our mailing list by clicking here.