In 2022, 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.

JANUARY 2022 / CREATION OF A MYODATA TEAM

Creation of a team dedicated to digital transformation and data management at the Institute of Myology, with the appointment of Maxime Jacoupy as Data Manager.

FEBRUARY 2022 / AN INNOVATIVE GENE THERAPY FOR STEINERT DISEASE

Team #4 at the Research Centre, led by Denis Furling, has developed and tested a new “decoy” gene therapy approach for Steinert disease (myotonic dystrophy type 1 – DM1) in collaboration with a research team in Lille. This study showed an improvement in muscle symptoms in the treated mouse model. This proof of concept offers hope for a potential clinical application for patients.

SEPTEMBER 2022/ MYOLOGY 2022 INTERNATIONAL CONGRESS

60 researchers and clinicians from the Institute of Myology highlighted their work and latest scientific results, from fundamental research to therapeutic advances, at the 7th edition of the Myology 2022 international congress, which brought together nearly 1,000 experts from all over the world in the field of myology and neuromuscular diseases in Nice.

OCTOBER 2022 / A PIONEERING TOOL TO ASSESS THE CARDIAC RISK OF NEUROMUSCULAR PATIENTS

Publication of the results of an international study coordinated by Professor Karim Wahbi and his Registries and Databases team. The aim is to gain a better understanding of the risk of adult patients with mitochondrial diseases developing long-term cardiac complications, and to improve the prediction and assessment of this risk in order to offer them appropriate treatment. This is the first time that such statistical tools have been proposed to enable risk stratification, an essential condition for preparing therapeutic trials.

NOVEMBER 2022/ LAUNCH OF SAPPHIRE TEST AT I-MOTION

Launch of a new phase II and III trial in SMA at I-Motion, the first centre to open in France. This trial, sponsored by Scholar Rock, Inc, aims to evaluate the effects of a treatment targeting the muscle, used in addition to another treatment which acts on the production of SMN protein. 204 patients will take part in this international trial.

DECEMBER 2022 / THE MYOLOGY FOUNDATION PROJECT

2022 was a crucial year for the future Myology Foundation project, with the signing of a promise of sale for a plot of land on the edge of the Pitié-Salpêtrière hospital. The architects Brunet Saunier & Associés and Belval & Parquet Architectes designed the building, which will cover almost 10,000 m2 by 2027. Designed with environmental quality in mind, it will aim for HQE Bâtiment Durable certification at the excellent level.

Events

01 / REDs TEAM AT IDMC-13 CONGRESS

The 13th Congress of the International Myotonic Dystrophy Consortium (IDMC-13) was held from 22 to 25 June 2022 in virtual Paris. Members of the Institute’s Research Centre’s Repeat Expansions & Myotonic Dystrophy (REDs) team took part in the two days of videoconference sessions, with three oral presentations and 5 e-posters.

02 / THE FIRST VIRTUAL SUMMER SCHOOL: AcadeMYO

The first fully virtual version of the Institute’s Myology Summer School was held from 11 to 13 July 2022. It brought together 44 participants from 27 countries. Around sixty courses were recorded and made available to students on the new online platform, AcadeMYO, from July 2021.

03 / MYOLOGY 2022 CONFERENCE

From 12 to 15 September, the Institute of Myology had a stand at the 7th International Myology Congress. This internationally renowned congress brings together nearly 900 experts in the field of myology and neuromuscular diseases from all over the world. 60 researchers and clinicians from the Institute were able to showcase their work and latest scientific findings, with no fewer than 59 papers (6 oral presentations and 53 posters) presented by our scientific experts.

04 / GRAND LIVE FETE DE LA SCIENCE

The 2022 edition of the Fête de la science took place from Monday 10 to Thursday 13 October. The Institute of Myology organised a major live event, as well as virtual “Apéros au labo” with researchers and scientists from the Institute. Fabrice Chrétien, Director of the Neuromuscular Investigation Center took visitors on a virtual tour of the 4 laboratories that make up the centre, where they could meet their managers and find out more about their activities. He then answered questions from internet users via a Facebook live specially organised for the occasion.

05 / 27TH INTERNATIONAL CONGRESS OF THE WORLD MUSCLE SOCIETY (WMS)

This annual congress of international muscle experts was held from 11 to 15 October 2022 in Halifax, Canada. Numerous papers were presented by scientific experts from the Institute of Myology, particularly in oral and poster sessions. Two researchers were awarded the Elsevier Subscription Prize for their work: Harmen Reyngoult, co-director of the NMR and Spectroscopy Laboratory at the Neuromuscular Investigation Center, and Amélie Vergnol, a thesis student at the Myology Centre for Research, in the Gene Therapy for DMD & Skeletal Muscle Physiopathology Group, directed by France Piétri-Rouxel.

06 / JOURNÉES DE LA SOCIETE FRANÇAISE DE MYOLOGIE (JSFM)

The 19th Journées de la Société Française de Myologie (JSFM) were held in Toulouse from 23 to 25 November 2022. This year’s event focused on innovation and the importance of exchanges between researchers and clinicians. Around fifteen scientific and clinical experts from the Institute of Myology took part. Three young researchers working in the “Cell and Molecular Orchestration in Muscle Regeneration, Ageing and Diseases” team led by Capucine Trollet and Vincent Mouly at the Myology Centre for Research received awards: Alexis Boulinguiez, a post-doctoral student, received the “Impulsion” prize and Hadidja-Rose Mouigni, a doctoral student, and Mona Bensalah, a research engineer, received the “MyoImage” prize.

Fundraising

01 / FUNDRAISING CAMPAIGNS

> 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 MYOLOGY FOUNDATION PROJECT

> 18 May: €68,000 raised thanks to the HOPE dance gala
We are grateful to have received the generous sum of €68,000 thanks to the HOPE dance gala. This gala, orchestrated by Laura, Christian Arend and Charlotte Ranson, took place in October 2021 at the Casino de Paris. This sum will enable us to continue our research and clinical projects to help neuromuscular patients.

> 24 May: “Discovering the Institute of Myology” live broadcast
Mélinée Frenkian, Director of Strategic Projects at the Institute of Myology, presented the Institute, its many areas of expertise and the projects to which donations contribute, in the presence of a group of donors. Research into muscle, a key public health issue, was discussed in order to shed light on the different roles played by this essential organ. Donors then had the opportunity to visit some of our laboratories.

03/ ALLIANCE OF CHAMPIONS

> January 2022: three new sports ambassadors join the Alliance of Champions: Grégory Coupet (former French international footballer and coach), Julien Fébreau (journalist and F1 commentator for Canal+) and Allison Pineau (French international handball player). They support our Foundation project and are working alongside us.