Blog Archives

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 between the Biogen laboratory and the French state that … [Read more]

Welcome to our 72nd newsletter! The international congress Myology 2019 officially opens next Monday at Bordeaux and will attend more than 800 experts coming from 35 countries. Each day, you will find on the website of the institute a report of sessions of the day before and interviews with speakers. Until then, please find the … [Read more]

Welcome to the first issue of our newsletter for the new year! Victory was the theme of the 2018 Telethon and the Institute of Myology can be proud of its own victories, which undoubtedly contribute to the whole. The year 2018 has been rich in progress and the institute is proud of every step taken … [Read more]

Welcome to the 70th issue of our newsletter! On December 7th, Telethon 2018 will begin and will be diffused on France 2. This Telethon will be marked by many victories including the first gene therapy results for neuromuscular diseases. Children who have not been able to move, sit up, raise their arms or catch things … [Read more]

After a long break for the summer holidays, welcome to the latest issue of our newsletter! The Great Family Celebration was an opportunity to look back on 60 years of struggles and victories, and to celebrate advances in research, rights and support for the patients. The kick-off of the Telethon 2018 has also been given: … [Read more]

Welcome to our 68th newsletter! Are you affected by a neuromuscular disease? Join us on September 15th to celebrate the 60th  anniversary of the AFM-Téléthon at the Big Family Fest. On the program, a day full of surprises, testimonials and exchanges. You will have the chance to meet doctors and researchers who can inform you … [Read more]

Welcome to our 67th newsletter! Remember! In 2009, Martine Barkats, then at Genethon, demonstrated in mice the efficacy of the vector and its systemic administration in the central nervous system to treat spinal muscular atrophy. Thanks in particular to this work (license agreement Genethon-AveXis announced last March 14th), AveXis is now developing a gene therapy … [Read more]

The 31st Telethon edition reaches a final result of 89,189,384 euros. On 8th and 9th December 2017, the Telethon enthralled the public throughout France. See you on December 7th and 8th 2018! In February 1958, a handful of parents who were outraged by the ignorance and powerlessness of medicine and science to cope with the … [Read more]

Welcome to the 65th issue of our newsletter! The Telethon 2017 ended on a counter of more than 75 million euros. A falling number that finds its major explanation in the attention naturally paid to the funeral of Johnny Hallyday, an extremely popular French singer. Thank you to all those who contributed and participated. Next … [Read more]

Welcome to the latest issue of our newsletter! This issue gives you an overview of the main topics of the latest WMS Congress among which the evidence of the efficacy of microdystrophin in DMD and other news from the Institute of Myology. In a few weeks, the Telethon 2017 will begin. The French singer Zazie … [Read more]