Milestones

In 2023, the Institute continued to roll out a cross-disciplinary 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 have worked in close synergy around the same ambition: the interests of the patient, in his or her care pathway, the recognition of Myology and scientific advances in research into the treatment of neuromuscular diseases.

FEBRUARY 2023 / MINIATURISED ‘MUSCLES’ TO MODEL MUSCULAR DYSTROPHIES

A team including researchers from the Institute of Myology has developed a 3D culture model of patients’ muscle cells on chips, capable of monitoring contraction at the level of a single cell.

Using LMNA-related congenital muscular dystrophy cells, the researchers were able to observe reduced contraction at cellular level. This miniaturised myotube technology could be used to study muscle cell function, organisation and force generation in a wide range of diseases and improve drug screening capacity.

MAY 2023 / THE INSTITUT DE MYOLOGIE PARTNERS THE GENOTHER BIOCLUSTER

The Institute of Myology is taking part in the Genother Biocluster, the brainchild of 7 founders representing excellence in gene therapy research.

This biocluster, dedicated to accelerating the development of gene therapy drugs and piloted by the Généthon laboratory, has been approved as part of the Innovation France 2030 plan.

JUNE 2023 / 1ST MUSCLE WEEK AND 1ST MUSCLE CONFERENCE

The Institute of Myology, in conjunction with AFM-Téléthon, is launching the first Muscle Week from 1 to 7 June. The aim is to raise public awareness of the major role played by our muscles in our daily balance and overall health. The Institute opened its doors to the public on 3 June for a day of discovery and immersion at the heart of the muscle.

On 1 June, the first Muscle Conference organised at the French Economic, Social and Environmental Council brought together more than 230 participants from the worlds of research, health, work, insurance and sport, all of whom agreed that muscle is a public health issue!

JUNE 2023 / APPOINTMENT OF FABRICE CHRÉTIEN AND OLIVIER STEPHAN

Fabrice Chrétien, Director of CEEN, has been appointed Director of Scientific Strategy at the Institute of Myology. His role will be to define the scientific vision of the Institute, and subsequently of the Foundation, in conjunction with the Board of Directors. He will be assisted by Olivier Stephan, who has been appointed Head of Scientific Operations.

OCTOBER 2023 / DEVELOPER COMPETITION FOR THE MYOLOGY FOUNDATION BUILDING

Following the signing of a promise of sale for a plot of land for the construction of the future building on the edge of the Pitié-Salpêtrière hospital at the end of 2022, efforts focused on the choice of developer in 2023 with a call for expressions of interest and five developer candidates selected to compete.

OCTOBER 2023 / THE RMN LABORATORY’S EXPERTISE USED TO IMAGE A PATIENT’S HEART IN VIVO

Researchers from the Institute’s NMR imaging laboratory, in collaboration with Professor Kamenicky, have published in the prestigious journal The Lancet NMR imaging methods developed to accurately monitor changes in the muscular and cardiac state of patients as a function of disease progression and proposed treatments. Our NMR imaging laboratory is one of the few in the world capable of imaging both functional skeletal muscle and cardiac muscle.

NOVEMBER 2023 / PUBLICATION OF THE RESULTS OF THE GENE THERAPY TRIAL FOR MYOTUBULAR MYOPATHY

The results of the gene therapy trial for myotubular myopathy, with a drug candidate designed by a Genethon team, have been published in the journal The Lancet Neurology. This international trial involving 24 young patients is taking place in 6 investigating centres worldwide, including I-Motion, the Institute of Myology’s paediatric clinical trials centre, and has enabled the majority of children treated to recover significant motor and respiratory capacities.

NOVEMBER 2023 / THE INSTITUT DE MYOLOGIE IS A PARTNER IN THE EUROPEAN ARTIFICIAL INTELLIGENCE PROJECT DREAMS

DREAMS is a unique European research consortium whose aim is to develop an innovative methodology combining AI, stem cells and pharmacological screening to identify treatments for 5 muscle diseases. It is coordinated by the I-Stem laboratory and brings together 8 partners, including the Institut de Myologie, which will be contributing its research and clinical expertise to the project at various key stages.

 

Events

01 / FIRST MUSCLE CONFERENCES

In collaboration with AFM-Téléthon, the Institute of Myology has organised the first Muscle Conferences on 1 June 2023. The aim was to highlight the essential role played by muscle in our lives and to raise awareness among politicians, institutions, health, prevention and education professionals, the world of work and the world of sport, of the public health issue that muscle represents. Organised at the Economic, Social and Environmental Council in Paris, the event brought together more than 230 experts from a wide range of backgrounds, all convinced of the crucial role of muscle and its many benefits to our health.

02 / ‘MUSCLE WEEK’ 1ST ISSUE

The Institute of Myology and AFM-Téléthon have launched the first ‘Muscle Week’. From 1 to 7 June, awareness-raising events organised by companies, health professionals, sports federations, schools and universities, and local authorities took place all over France to make people aware of the importance of muscle in our daily balance and how vital it is to preserve our muscular capital. The Institute opened the doors of its laboratories to the public for this special occasion, so that visitors could discover its activities and expertise and immerse themselves in the heart of muscle.

03 / 25 YEARS OF THE ACADEMYO SUMMER SCHOOL

The Myology Summer School celebrated its 25th anniversary in 2023, and was held from 12 to 16 June in a hybrid format.

Fifty participants from 26 different countries took part, including around twenty face-to-face participants. Some forty videos, representing around 50 hours of classroom lectures, were recorded and made available online to students on the AcadeMYO platform from 2021 for those choosing distance learning.

04 / 28TH INTERNATIONAL CONGRESS OF THE WORLD MUSCLE SOCIETY (WMS)

This annual congress of international muscle experts was held from 3 to 7 October 2023 in Charleston, United States. Several papers were presented by scientific and clinical experts from the Institute of Myology, notably in three oral sessions and 28 posters. Post-doctoral researcher Mariko Okubo, in Gisèle Bonne’s team at the Research Centre, received the Léa Rose Award for her work on gene therapy in laminopathies.

05 / DAYS OF THE FRENCH MYOLOGY SOCIETY (JSFM)

The 20th Journées de la Société Française de Myologie (JSFM) were held in La Baule from 15 to 17 November 2023, an anniversary edition that revisited the major current themes in Myology. Seven scientific and clinical experts from the Institute of Myology gave oral presentations in the plenary session, and 21 posters by our researchers and clinicians were presented to the conference community.

 

Fundraising

In 2023, the generosity of our donors enabled us to raise €531,000 to fund research projects and our Foundation of Myology Ambition.

>64.5% Strategic coordination of the Foundation of Myology project (project management, architectural, legal and tax studies, etc.)

>3.5% Funds earmarked for project development and the future Foundation building

>32% Communication and fundraising costs related to the development of the Foundation project

 

01 / FUNDRAISING CAMPAIGNS TO SUPPORT OUR FOUNDATION PROJECT

> April-June: spring campaign (around 4,655 people targeted, €196,900 raised).

> September-December: autumn campaign and follow-up campaign at the end of the year (around 15,410 people targeted, around €181,700 raised).

> Building loyalty among members of the Alliance of Champions (around €84,500 raised).

 

02 / ACTIONS TO RAISE AWARENESS OF THE FOUNDATION OF PROJECT

> 7 February: donor and partner afterwork event at the Pavillon de l’Arsenal in Paris: presentation of our Myology Foundation architectural project and our events to raise awareness of the muscle as a public health issue (Muscle Conferences and Muscle Week).

> 13 December: donor evening at the Plaza Athénée in Paris, kindly made available to us, in the presence of Stéphane Diagana, ambassador of the future Myology Foundation. Les Hérissons au Cœur d’Or’ association presented a cheque for €30,000 to the Myology Institute.

CONTINUATION OF STRATEGIC SCIENTIFIC RESEARCH PROJECTS:

• ALS (Amyotrophic Lateral Sclerosis) research project

• DM1 research project (Myotonic Dystrophy type 1, Steinert disease)

USE OF DEDICATED FUNDS FINANCED BY MAJOR DONORS FOR SCIENTIFIC RESEARCH PROJECTS:

• MyoMessage project (understanding communication between cells to heal and repair muscle): €46,600

• AssistMyo project (evaluation of assistance devices for neuromuscular patients): €52,300

• ALS project: €5,100

• Pompe disease registry: €14,500