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66 participants: all time record for our 2019 Summer School!

The 22nd edition of our Summer School of Myology just ended. It took place at the Institute of Myology from June 17th to 22nd. Every year, the Institute offers the possibility to get trained in Myology thanks to a condensed 6-day course organized in Paris. The course is open to foreign applicants whichever country they … [Read more]

Two gene therapy trials underway at I-Motion 

Of the roughly 20 clinical trials underway at I-Motion, two concern gene therapy, which constitutes one of the preferred approaches to treating genetic diseases. It consists of inserting, into the cells of the patient, a normal version of a gene that is not functioning properly and that is causing the disease. The properly functioning gene … [Read more]

“REDs” team 4 from Research Centre in the spotlight at IDMC-12

The 12th International Myotonic Dystrophy Consortium Meeting (IDMC-12) brings together, every 2 years, leading scientists specialising in myotonic dystrophy from all over the world. This year, it was held from 10 to 14 June 2019 in Gothenburg, Sweden. Several members of the “Repeats expansion & DM” (REDs) team 4 from the Institute’s Research Centre presented … [Read more]

SMA gene therapy: it is becoming possible to defeat the disease

At a time when the first gene therapy for spinal muscular atrophy has just received US marketing authorisation, the first French children are starting to benefit from this treatment. Next expected stage: marketing authorisation in Europe. On 24 May, the US authorities (FDA) gave their authorisation to market a gene therapy for spinal muscular atrophy … [Read more]

The Myology Centre for Research opens a postdoctoral position

The team “Repeat Expansions & Myotonic Dystrophy” led by D. Furling at the “Centre de Recherche en Myologie, UMRS974” (Sorbonne Université, Inserm) located within the “Institute of Myology” in Paris (France) opens a postdoctoral research scientist position in the area of skeletal muscle biology. Research topics of the team are focused on Myotonic Dystrophy type … [Read more]

Institute seminar – 11 June – Bernard Brais, MD PhD (Canada)

Disturbances of calcium homeostasis in the Strongman syndrome Monday 17 June 2019 – 12:00-13:00 Bernard Brais MD PhD (Neurogenetician, McGill Universtity, Montreal Neurological Institute, Canada) Host : Capucine Trollet Stomatology Amphitheatre Hôpital de la Pitié-Salpêtrière Entrance 82 bd Vincent Auriol metro Chevaleret

Release of the 73rd newsletter from the Institute

2024 Institute of Myology strategic project   Welcome to our 73rd newsletter.   A historic first: on May 24, the Food and Drug Administration approved Zolgensma®, a gene therapy drug for the treatment of spinal muscular atrophy. This is the first gene therapy authorized for a neuromuscular disease.   In France, an agreement was reached … [Read more]

A strategic project for the Institute of Myology

The Institute of Myology was endowed with a strategic project destined to be develop and sustain myology, to raise awareness and for the most part gather attention around the Muscles on the Horizon 2024, the dates of the Olympic games. Interview with Marianne Perreau-Saussine, Secretary General of the Institute.    In what context was the … [Read more]

Spinraza®: coverage for all SMA type 1,2,3 patients

An agreement was reached between the Biogen laboratory and the French state that allows access to medicine for all concerned patients. Concerning the management of Spinraza®, the first innovative therapeutic medicine offered to patients with spinal muscular atrophy. This agreement gives access to medicine for all patients concerned by type 1,2 and 3 spinal muscular … [Read more]

An international, prospective study on the natural history of X-linked myotubular myopathy

An article published in April in Neurology reports the work of a team of international experts including I-Motion clinicians and researchers from the Institute of Myology. The authors designed an international, prospective and longitudinal study of the natural history of patients with X-lined myotubular myopathy. Interview with Melanie Annoussamy, the first author of the article. … [Read more]