Blog Archives

10th edition of the “1000 researchers in schools” campaign – 7 Nov-3 Dec

The scientific campaign operation for secondary school students “1000 researchers in schools in France and abroad” is celebrating its 10th anniversary! It will take place between 7 November and 3 December in schools. These meetings between secondary school classes and scientists from laboratories at the cutting edge of medical research are a special opportunity to … [Read more]

One word to describe the congress “Myology 2022”

Intriguing, friendly, fast-paced, cross-disciplinary… it’s not easy to sum up the 7th edition of the Myology Congress organized by the AFM-Telethon in a single word. Discover the answers of the researchers who took up the challenge! Myology 2022 is over! During 4 days, researchers, clinicians and experts in myology were able to exchange on the … [Read more]

A review of the literature compares prednisone and deflazacort in DMD and favours the latter in the short term, while in the long term their effects are similar

Corticosteroids prescribed from the age of 4 to 5 years in Duchenne muscular dystrophy enable the loss of walking to be delayed by at least 2 years and protect the respiratory function in particular. But between prednisone/prednisolone and deflazacort, the question remains: which one to prescribe? A review of the literature analysed publications involving hundreds … [Read more]

ERN EURO-NMD webinar, Sept. 22nd : Prof. Costanza Lamperti (Italy)

Mitochondrial Genetics Thursday September 22nd, 2022 – 16:00-17:00 (Paris time) Prof. Costanza Lamperti (lstituto Neurologico C.Besta, Milan, Italy)   Please register here to attend the webinar   Webinar organised by EURO-NMD in collaboration with ERN-RND and EAN.

What alternative to face-to-face rehabilitation in DMD?

In a study published in May 2022, a Turkish team carried out a measurement of muscle strength and a functional evaluation of motor performance in 19 patients with Duchenne muscular dystrophy, randomly divided into a group performing exercises in tele-rehabilitation and a control group limited to doing the same exercises following videos. The exercises proposed … [Read more]

September 15: International Myotonic Dystrophy Awareness Day

September 15, 2022 marks the second International Myotonic Dystrophy Awareness Day, which aims to highlight these rare diseases in order to improve diagnosis, care and support, as well as to advance research.   What are myotonic dystrophies?  Myotonic dystrophies – myotonic dystrophy type 1 (or DM1 or Steinert’s disease) and myotonic dystrophy type 2 (DM2) … [Read more]

McArdle: clinical trial proves benefits of exercise

A clinical trial of 17 people with McArdle’s disease demonstrated the potential benefits of a 2-year training program targeting endurance and strength. Six of the 10 patients who completed the program became asymptomatic, while the others experienced an improvement in their symptoms. In the control group without exercise, the disease remained stable at best. Another … [Read more]

Myology 2022: opening session

On Monday, September 12, took place the opening session of the 7th edition of the international congress Myology 2022 was held with Laurence Tiennot-Herment, president of AFM-Telethon, and the co-presidents of the event, Elisabeth McNally, a specialist in cardiac muscle, and Shahragim Tajbakhsh, a specialist in muscle biology.  

Myology 2022: Institute of Myology experts will highlight their last scientific results

During four days, from 12 to 15th of September, researchers and clinicians of the Institute of Myology will attend the seventh International Congress of Myology, organized by AFM-Téléthon. This renewed international congress brings together around 800 experts in the field of Myology and neuromuscular diseases from all over the world (35 countries). More than 70 … [Read more]

World Duchenne Awareness Day: women speak out

September 7th is World Duchenne Muscular Dystrophy Awareness Day. It is an opportunity to raise awareness on this rare disease that affects 250,000 people worldwide. And if it is mostly boys who are affected, the disease also affects girls. To talk about it, this year, the theme chosen for the Awareness Day is “Women and … [Read more]