Marianne Perreau-Saussine, General Secretary of the Institute of Myology, highlights the main achievements of the institute during 2017 and outlines the perspectives for 2018.
What were the main achievements of the Institute of Myology in 2017?
Amongst all of our achievements, and for the organisation of research, I would say the arrival of Bertrand Fontaine, advisor to the President of AIM, and leader of the Myology Centre for Research (MCR). He actively participated in the development of the MCR project for 2019-2024, as part of the High Council for Evaluation of Research and Higher Education (HCERES) assessment procedure, which is recognised for its excellence by international experts. I would mention the Avi Kremer ALS Treatment Prize from Prize4Life rewarding Martine Barkats and Maria Grazia Biferi for their gene therapy approach
In terms of healthcare organisation, accreditation of the neuromuscular reference centre was renewed by the Ministry of Health. Its scope has been extended. It is still under the responsibility of Bruno Eymard, who was also appointed as coordinator of reference centres for all of the Ile-de-France region, and the East and North of France.
Regarding clinical trials, of note was the innovative management of SMA patients allowed early access (Temporary Use Authorisation, TuA) to Spinraza® at I-Motion, and whose results are very encouraging. In addition, trials have increased by almost 20% this year at I-Motion.
Finally, as far as education is concerned, 2017 saw the creation of a Myology teaching unit at the Université Paris Descartes (Paris V) in the 3rd year of the Bachelor’s degree. This will pave the way to the recognition of myology as an academic discipline.
What are the perspectives for 2018?
The Muscle Foundation of course! Because it is our project, our horizon, which underlies all of our actions. In 2018, it must definitely become a reality, to initiate the virtuous mechanics towards the development and excellence of research and healthcare.
Concretely, we have resumed discussions with our partners in January, we aim to submit the statutes in June and the first studies for the building in September.
Prior to this, the scientific and medical project will be finalised in March 2018, in conjunction with the hospital project, notably the neuromuscular care unit, follow-up and rehabilitation care and equipment, and respiratory assistance. In parallel, we will strengthen adult clinical activity at La Pitié-Salpêtrière.
Furthermore, our goal this year is to further diversify our resources and to structure our policy of promoting research and inventions developed by our teams.
Finally, we will increase collaborations with Généthon, I-stem, UPEC, FILNEMUS and all the myology forces in France, throughout the year.
