New cross-functional projects were launched in 2021, as part of the redesign of the strategic plan, including the implementation of a cross-functional quality approach and a new strategic focus on the digital transformation of the Institute of Myology to support research and innovation. All of the Institute’s teams worked in close synergy around the same ambition: the interest of the patient, in his or her care path, the recognition of Myology and scientific advances, from research to the treatment of neuromuscular diseases.
MARCH 2021 / START OF A GENE THERAPY TRIAL FOR DUCHENNE MYOPATHY, 1st PATIENT INCLUDED AT I-MOTION
The gene therapy trial for Duchenne muscular dystrophy, conducted by the Genethon laboratory, is starting at the Institute of Myology within the I-Motion Pediatric clinical trial platform, located at the Trousseau Hospital. The objective of this trial is to treat muscles in a single injection by providing the body with a shortened version of the dystrophin gene, responsible for the disease.
JUNE 2021 / APPOINTMENT OF PR FABRICE CHRETIEN AS HEAD OF THE NIC
Professor Fabrice Chrétien joins the Institute of Myology to direct the Neuromuscular Investigation Center (NIC), which brings together four expert centers of excellence.
JULY 2021 / A CUTTING-EDGE ELECTRON MICROSCOPY SERVICE
The Institute has acquired a new generation transmission electron microscope offering unprecedented image quality, detail and analysis. This cutting-edge equipment will allow the Institute’s teams to pursue their research and diagnostic work with increased efficiency, but also to offer a precision electron microscopy service to other external teams. The images taken and identified will also enrich the Muscle Atlas, the first image database on muscle, created in September 2020 and already listing more than 5,000 images of muscle biopsies.
JULY 2021 / LAUNCH OF ACADEMYO, THE NEW MYOLOGY SUMMER SCHOOL
The Institute of Myology has redesigned its summer school following the pandemic and launched AcadeMYO, the first entirely virtual version of the Summer School of Myology. This edition, which took place online from July 5 to 9, was a great success. It was attended by 110 people of 45 different nationalities.
OCTOBER 2021 / HOPE, CHARITY DANCE GALA
On October 21st, the HOPE association, at the initiative of Laura Arend, dancer and choreographer, Charlotte Ranson, dancer at the Paris Opera and Christian Arend, organized an exceptional dance gala bringing together renowned artists from the contemporary and classical scenes. This unique show raised €68,000 for muscle research at the Institute of Myology and its future Foundation.
NOVEMBER 2021 / THE MYOLOGY FOUNDATION PROJECT
2021 was a crucial step in the advancement of the future Myology Foundation project with the identification of a plot of land for the construction of the future building that will embody it on the edge of the Pitié-Salpêtrière hospital. Following the drafting of specifications and a study of needs, a call for expressions of interest was published in November to launch the competition for the project manager.
DECEMBER 2021 / START OF TWO CLINICAL TRIALS WITH EXOSKELETONS
Two new clinical studies began at the Institute of Myology in December to evaluate the effectiveness of exoskeleton models for the compensation of muscle weakness in the lower limbs of 80 patients suffering from neuromuscular pathologies. These studies, which will last 18 months, are being conducted in the Institute of Myology’s physiology and neuromuscular evaluation laboratory.
01 / APPOINTMENTS / PROMOTIONS
> Prof. Fabrice Chrétien joined the Institute of Myology in June to head the Neuromuscular Investigation Center (NIC), which includes four laboratories.
> Dr. Teresinha Evangelista took over the management of the histopathology laboratory following the retirement of Dr Norma Beatriz Romero.
> Dr. Giorgia Querin, neurologist, has been appointed Director of the two clinical trial platforms I-Motion Pediatric and Adult.
> Piera Smeriglio, PhD has taken over the management of Group 6, BOND-Biotherapies for Motor Neuron Diseases (ALS & SMA) of the Myology Research Center from Maria Grazia Biferi.
> Stéphane Vassilopoulos, PhD and Laure Strochlic, PhD have been promoted to Inserm Research Directors in teams 2 and 10 of the Myology Research Center respectively.
02 / 26TH INTERNATIONAL CONGRESS OF THE WORLD MUSCLE SOCIETY (WMS)
This annual meeting of international muscle experts was held in Paris from September 20 to 24, 2021. Some thirty papers were presented by scientific experts from the Institute of Myology, notably in the “Clinical trial highlights” and “Clinical research” oral sessions.
03/ HOPE: A UNIQUE DANCE GALA TO BENEFIT MUSCLE RESEARCH
On October 21, 2021, the HOPE association, at the initiative of the dancer and choreographer Laura Arend and Charlotte Ranson, a dancer at the Paris Opera, presented a unique ballet bringing together the great names of the contemporary and classical dance scene at the Casino de Paris. This exceptional gala raised €68,000 for the Myology Institute Association.
04 / DAYS OF THE FRENCH MYOLOGY SOCIETY (JSFM)
At the French Myology Society congress in Saint-Etienne, from November 24 to 26, some thirty scientific and clinical experts from the Institute of Myology spoke. Charles Frison-Roche, a doctoral student in Team 4, Repeat Expansions & Myotonic Dystrophy (REDs) led by Denis Furling, received the prize for the best oral presentation for his thesis project, supervised by Frédérique Rau, focused on the role of motor neurons in DM1 (Steinert disease).
01 / DONATION CAMPAIGNS TO SUPPORT OUR FOUNDATION PROJECT
> April-June: spring campaign with IFI focus (more than 5000 people targeted, 186 220 € collected).
> Campaign of relational calls to our donors.
> September-December: Autumn campaign with focus on IR** and follow-up campaign at the end of the year (over 16,000 people targeted, approximately €371,350 collected).
> Loyalty of the members of the Alliance of Champions (about 167 900€ collected).
02 / ACTIONS TO RAISE AWARENESS OF THE MYOLOGY FOUNDATION PROJECT
> Deployment of a new visual identity for our “Ambition Myology Foundation” campaigns on and offline with a new concept of video interviews with experts (“A Question to” and “Crossed views on”)
> May and November: organization and broadcasting of a first webinar on the creation of the Myology Foundation and a second on digital technology and artificial intelligence with the DataMyo project.
> October: organization of the HOPE solidarity dance gala, orchestrated by dancers Laura Arend and Charlotte Ranson and their companies, at the Casino de Paris, which raised €68,000 for muscle research.
03/ ALLIANCE OF CHAMPIONS
> Recruitment of three new sports ambassadors who join the Alliance of Champions, alongside the sportsmen and women who support our Foundation project and who are mobilizing alongside us: Grégory Coupet – former French international soccer player, goalkeeper and now coach, Julien Fébreau – journalist and F1 commentator for Canal+ and Allison Pineau – French international handball player, came to discover and visit the Institute of Myology.
|IN 2021, THANKS TO YOUR GENEROSITY, €779,671 TO FINANCE RESEARCH PROJECTS AND THE FUTURE MYOLOGY FOUNDATION
> 02% Financing of strategic scientific and medical projects and innovative research tools
> 20 % Strategic coordination of the Myology Foundation project (project management, architectural, legal and tax studies, etc.)
> 61% Funds reserved for the development of projects and the
and the future Foundation building
> 17% Communication and fundraising expenses related to the development of the Foundation project
Strategic Plan 2019-2024
The Institute of Myology is an international expert center dedicated to the pathologies of the neuromuscular system that is organized around five main activities: internationally renowned basic research, clinical research (studies and clinical trials), functional evaluation (patient monitoring, development of muscle evaluation tools and imaging), diagnosis and care (clinical management, hospitalization and monitoring of neuromuscular patients) and education (diploma courses and open education).
01 / OUR CHALLENGES
The Institute of Myology is facing major scientific, medical, economic, institutional and partnership challenges. The implementation of the strategic plan, which has been unfolding since 2019, will allow us to take a new step and change dimension with the goal of soon creating a Myology Foundation, which will become an international reference center for the Muscle.
The challenge is to accelerate discoveries and strengthen the leadership of the Institute of Myology by cultivating its uniqueness and distinctive assets. Our ambition is to understand the functioning of muscle throughout life (healthy, diseased, athletic, aging) and our priority is the development of treatments for patients with neuromuscular diseases.
The strategic plan must give us the means to achieve our ambitions, in particular by promoting research and innovation for the benefit of patients.
We wish to pave the way for the recognition of a new medical and scientific discipline recognized by all, Myology.
02 / ONE AMBITION, THREE PRIORITIES FOR THE INSTITUTE OF MYOLOGY
Our ambition: to build a Center of excellence and scientific and medical innovation focused on the patient and allowing myology to be perpetuated for the benefit of society as a whole. Our priorities are: to improve the care pathway and patient access to innovative treatments, to accelerate and facilitate the research process from discovery to medication, and to exercise our medical and scientific leadership in order to promote myology through an open and efficient organization.
The Institute of Myology’s strategic plan was drafted by a community of experts, internal to the Institute of about 70 people, and validated by the Board of Directors of the Association of the Institute of Myology, then shared with all institutional partners. Ten strategic objectives have been defined for the Institute of Myology, with, for each, axes of achievement to be followed and implemented.
03 / 2021 : A YEAR OF REFLECTION AND PROGRESS
This year, the strategic plan continued and certain objectives were reactivated, such as the objective concerning the future building of the Myology Foundation.
Indeed, a plot of land has been identified for this future building and the teams have been mobilized to work on this particularly ambitious project (on the legal, financial and patrimonial levels).
Being at the halfway point and at a key stage of the strategic plan, we have begun to rework our objectives in order to better structure them for the next two years and to better integrate them into the challenges to be met as we move towards the Foundation. For example, the year 2021 has enabled us to set up a new strategic objective focusing on digital technology and the digital transformation of the Institute to support research and innovation.
The Institute’s strategic plan will extend over the coming years until 2024, the key year of the Paris Olympic Games, an exceptional opportunity to bring together sport, innovation and health, with the Muscle as a common thread.