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Institut de la Myologie

Newsletter #93 – March 2023

Muscle, a major public health issue

The Institute of Myology and the AFM-Telethon organized a press conference on Tuesday, 7 February 2023, on the theme of muscle, an essential tissue in everyday life and throughout life: Muscle is a major public health issue.

Beyond their primary function – motor skills – studies have shown that the state of the muscles, by interacting with numerous organs and biological mechanisms, is a major determinant of the individual health condition. Moreover, while 400 neuromuscular diseases have been identified, muscle is also affected in the main chronic pathologies such as metabolic diseases, cardiovascular diseases, but also cancer and diabetes, and can constitute a prognostic marker for these pathologies.

Muscle therefore represents a real public health issue but is not currently recognized as such and its scientific and medical study – myology – remains insufficiently recognized and taught.

This is why the Institute of Myology and the AFM-Telethon are organizing two major events in June 2023 to bring this topic and its challenges to the attention of as many people as possible:

  • The first “Muscle Conferences”, on 1 June 2023, at the Economic, Social and Environmental Council (by invitation)
  • The first “Muscle Week”, 1-7 June 2023, a public awareness event deployed and relayed throughout the country

The Institute of Myology and the AFM-Telethon have also announced their joint project to create a Myology Foundation with a new building that will be built in 2027, in Paris, near the Pitié-Salpêtrière hospital. This building, designed by the architects Brunet Saunier Associés and Belval & Parquet Architectes, will cover almost 10,000 m² and will be a place of international influence whose objective is to study, diagnose, evaluate and treat muscle, whether healthy, diseased, aging or trained.

> Muscle, a major public health issue

> Read the interview with Laurence Tiennot-Herment

> Find out more about the Foundation of Myology project led by the Myology Institute Association and the AFM-Telethon

Latest news: 90,839,067 euros for the Telethon 2022: we have not given up. We thank you all!

Thank you to everyone: donors, volunteers mobilized throughout France and abroad, partners, personalities! Thanks to your unfailing mobilization on December 2 and 3, the Telethon 2022 raised 90,839,067 euros! This tremendous result – the best since 2016 – shows how much the French people support the struggle of families. The 2023 Telethon will take place on December 8 and 9.

> Read more about the results of the Téléthon 2023 (in French)

At the institute
First « Muscle Conferences » on 1 June 2023 Organised by the Institute of Myology, with the support of the AFM-Telethon, the first “First « Muscle Conferences » on 1 June at the Economic, Social and Environmental Council” will take place on 1 June 2023 at the Economic, Social and Environmental Council in Paris. The aim of the Conferences is to highlight the essential role of muscle in life and to raise awareness of the public health issue that muscle represents among politicians, institutions, health, prevention and education stakeholders, as well as the world of work and sport. Read more

First « Muscle Week », 1-7 June 2023 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. Read more

Summer School of Myology 2023 The (provisional) programme of the next Summer School of Myology has been established. For the record, this 25th session will take place at the Institute of Myology in Paris from 12 to 16 June, in two ways: face-to-face, for 40 to 50 people, and online, on the same dates, for remote participants. Read more

A look back at the 27th SFNP meeting The 27th meeting of the Société Francophone du Nerf Périphérique (SFNP), which took place on 10 & 11 March 2023, was organised this year in collaboration with the Société Francophone d'Electroneuromyographie (SFENMG). Read more

Researchers from the Institute’s NMR laboratory at the SFRMBM 2023 conference The 6th conference of the French Society of Magnetic Resonance in Biology and Medicine (SFRMBM) was held in Paris from 27 to 29 March 2023. The latest methodological advances and innovative applications in magnetic resonance imaging and magnetic resonance spectroscopy were presented. 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 guests in April and May 2023: Pr Dame Pamela Shaw (UK) and Michael Snyder (USA). Read more

Our latest news
Cross-sectional study of neuromuscular fatigue in autoimmune myasthenia – Interview with S. Birnbaum Simone Birnbaum, a researcher at the Neuromuscular Physiology and Evaluation Laboratory directed by Jean-Yves Hogrel (NIC, Institute of Myology) has just published an article assessing neuromuscular fatigue in persons with Myasthenia gravis in the journal Clinical Neurophysiology. Read more

Fiorella Grandi, winner of the prestigious Marie Sklodowska-Curie 2022 postdoctoral fellowship – Interview with F. Grandi and P. Smeriglio Fiorella Grandi started a postdoctoral fellowship in October 2022 in the Epigenetics and biotherapies for motor neuron disorders (ALS & SMA) group led by Piera Smeriglio. Her project focuses on the epigenetic mechanisms that influence the efficacy of gene therapy. Read more

Quantitative MRI to assess the evolution of muscle condition In this prospective study, researchers and clinician from the Institute of Myology aimed to establish the sensitivity of the quantification of the extracellular volume fraction via a magnetic resonance fingerprinting sequence with separation of water and fat as a quantitative imaging biomarker of skeletal muscle tissue alterations in Becker muscular dystrophy compared to the quantification of the fat fraction and water relaxation times. Read more

A new clinical trial on DM1 at the Institute of Myology The double-blind, placebo-controlled phase I/II ACHIEVE trial is evaluating DYNE-101. This drug candidate for DM1 is an antisense oligonucleotide coupled to an antibody fragment targeting the hTfR1 receptor. Read more

Standards now available for muscle fibre size and type during growth The evolution of muscle fibre morphometry during growth is poorly understood. French researchers and engineers involving scientists from the Institute of Myology have used a new image analysis algorithm (Carpaccio.Cloud) to better measure the evolution of several quantitative parameters over time. Read more

The induction of self-tolerance is back on the agenda in myasthenia gravis According to preclinical work by Spanish researchers, carried out with the help of Rozen Le Panse’s team at the Institute of Myology, intraperitoneal injection of acetylcholine receptors (RACh) encapsulated in liposomes rich in phosphatidylserine decreases the anti-RACh antibody level and improves physical performance in an myasthenia gravis experimental mouse model. Read more

A new pathophysiological mechanism to explain asymmetry in mitochondrial myopathies A team of French clinicians involving doctors from the Institute of Myology report the case of a 34 year old patient with highly asymmetric segmental and oculomotor muscle damage. Read more

The effectiveness of therapies in DMD depends on the territorial distribution of dystrophin The distribution of dystrophin in the muscle fibre is not uniform. It is dependent on the cell nuclei, thus creating small functional units at the sarcolemmal level. Researchers from the University of Versailles Saint-Quentin-en-Yvelines, with the contribution of Genethon and the Institute of Myology, have carried out experiments in transgenic mice Read more

More breaking news
Beneficial effects of tamoxifen on muscle strength in mouse models of centronuclear myopathies A team from Strasbourg, supported by the AFM-Telethon, has studied the repositioning of tamoxifen in centronuclear myopathy (CNM), a drug which has already shown its efficacy in the animal model of myotubular myopathy or Duchenne muscular dystrophy. Read more

Clinical gender differences in FKRP-related LGMDR9 Using four patient registries, one study was able to identify all patients (153) in Norway with genetically confirmed FKRP-related LGMD R9. Statistical analyses of a group show clinical differences, unlike other LGMD (R1, R7, R12…). Read more

Spinal muscular atrophy
Myasthenia gravis
Inflammatory myopathies
Fibrodysplasia ossificans progressiva
Duchenne muscular dystrophy
Muscle lipidosis
Basic research and other disorders
In brief
Interview with Dr Gisèle Bonne on WMS website The WMS recently launched a new series of interviews for its website, 'Meet the Members', in which Ruchee Patel talks to leading figures in the WMS. This month, Dr Gisèle Bonne (Director of the Institute's MCR Genetics and Pathophysiology of Extracellular Matrix and Nucleus Related NMDs team) looks back at her background and the crucial encounters in her career. Read more

Treatments and diagnosis for rare diseases: crucial issues The availability of treatments and the end of diagnostic delays are major challenges for people with rare diseases. Read more

Rare diseases: AFM-Telethon calls for the creation of a public fund to ensure access to treatment AFM-Telethon is advocating for the creation of a public intervention and innovation fund in France for the treatment of ultra-rare diseases with no prospect of commercial profitability. The aim: to guarantee access to treatment for all. Read more

Upcoming webinars organized by EURO-NMD coming webinars organized by the European network EURO-NMD: 6 April 2023: Prof. Werner Stenzel "Inflammatory Myopathies" ; 27 April 2023: Dr. Nicole B.M. Voet "Fatigue in Neuromuscular Disorders" and 4 May 2023 : Dr Ulrike Schara-Schmidt "Floppy child". Read more

5th Neuromuscular Translational Summer School – 10-14 July 2023 – Leiden, The Netherlands Lectures concerning the management of acquired and genetic neuromuscular diseases, the different steps of drug development, assessment tools, communication and the role of the patients in each of these steps. Read more

50th European Muscle Conference - 2-6 September 2023 - Florence, Italy Registration is open. Abstract submission deadline is 30 April 2023. Read more

WMS 2023 - 3-7 October - Charleston, USA Registration is open. Abstract submission deadline is 19 April 2023. Read more

2023 Duchenne Research Grant Program Opening of the research grant program by Defeat Duchenne Canada, a Canadian association dedicated to the eradication of DMD through research support. Read more

JOB OPPPORTUNITIES The European Reference Networks EURO-NMD is recruiting a Project Assistant (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.