Institut Imagine and ARSLA are joining forces within the Charcot Institute to accelerate research on ALS and motor neuron diseases.

Published on 04.11.2026

Amyotrophic lateral sclerosis (ALS) remains a disease of extreme urgency: in France, 7 new cases are diagnosed and 7 people die every day. Approximately 8,000 people are living with this disease, and life expectancy is generally between 2 and 5 years after diagnosis. In this context, time is the greatest enemy: accelerating research, diagnosis, and access to therapeutic innovations is essential.

Amyotrophic lateral sclerosis (ALS) remains a disease of extreme urgency: in France, 7 new cases are diagnosed and 7 people die every day. Approximately 8,000 people are living with this disease, and life expectancy is generally between 2 and 5 years after diagnosis. In this context, time is the number one enemy: accelerating research, diagnosis, and access to therapeutic innovations is essential.

Institut Imagine and ARSLA are joining forces to support the Charcot Institute, an initiative dedicated to accelerating research on ALS—also known as Charcot’s disease—and other motor neuron diseases.

This new alliance aims to bring together researchers, clinicians, people living with the disease, advocacy groups, innovation leaders, and public and private partners around a shared goal: to accelerate progress in understanding and developing therapeutic solutions for Charcot’s disease.

In the face of serious, complex, and still inadequately treated diseases, the Charcot Institute aims to create the conditions for coordinated, open research that is closely aligned with the needs of those affected. Its goal is to bring together expertise in basic research, clinical research, patient care, technology, the nonprofit sector, and innovation in order to more quickly identify new avenues for diagnosis, treatment, and support.

For 160 years, ALS has been attacking us, and we’ve been completely powerless to stop it. Thanks to this alliance, which is taking shape today, the time has come to fight back. […] I believe in you, and I’m counting on you. […] One day, you’ll see me hugging my daughter, and then you’ll see in my eyes the purest expression of the word “gratitude.”
 

Nicolas Beretti,

a person living with ALS and co-founder of the Charcot Institute

 

Translational Research on ALS at Institut Imagine.

At the Imagine Institute, the Neurological Diseases Research Team, led by Edor Kabashi—who is also vice president of ARSLA—focuses in particular on genetic forms of ALS, ranging from patient characterization and genetic markers to disease modeling and the identification of therapeutic targets.
The FUSyMETArgets project (“Identification of Therapeutic Targets and Biomarkers for ALS Caused by FUS Mutations”) aims to better understand the biological mechanisms associated with FUS mutations, the primary genetic cause of juvenile forms of ALS. This pioneering project aims to identify therapeutic targets and biomarkers useful for characterizing patients, monitoring disease progression, and evaluating future precision medicine approaches.

A collective effort under the auspices of Inserm

Organized under the auspices of Inserm and its President and CEO, Prof. Didier Samuel, the event on September 10 brought together researchers, clinicians, patients, patient organizations, and partners around a shared goal: to better integrate expertise, data, infrastructure, and development capabilities in order to accelerate the transition from discovery to patient care.

Turning Scientific Advances into Tangible Progress

ALS is a neurodegenerative disease that affects motor neurons, which control voluntary movements. Research today must address several challenges simultaneously: better understanding the mechanisms of the disease, identifying biomarkers that enable more accurate diagnosis and monitoring, developing new treatments, and improving the quality of life for those affected at every stage.

The Charcot Institute will be dedicated to supporting and coordinating research programs ranging from basic discoveries to preclinical and clinical studies. The first six projects have been selected.

Pooling Knowledge to Move Faster

The Charcot Institute is also dedicated to facilitating the sharing of expertise, data, biological resources, tools, and best practices. Pooling cohorts, biological collections, databases, and research platforms will strengthen teams’ ability to understand the diversity of motor neuron diseases and to develop more personalized approaches.

Data science, modeling, artificial intelligence, and digital technologies will contribute to this effort. They will offer new possibilities for analyzing complex data, identifying early warning signs, better selecting patients for clinical trials, and accelerating the evaluation of innovative solutions.

Uniting a Research Community Dedicated to Patients

By combining the expertise of the Imagine Institute with ARSLA’s longstanding commitment to patients, families, and the scientific community, the Charcot Institute will adopt a resolutely collaborative approach. It will foster collaborations among academic, hospital, nonprofit, technology, and industry stakeholders, both in France and internationally.

The Institute will support training, project funding, knowledge sharing, and the application of research findings. In this way, it aims to advance ambitious, rigorous research focused on a concrete goal: to offer new diagnostic, therapeutic, and care options for people living with ALS or other motor neuron diseases.

Press contacts: