ETUDE SLA MICROBIOTE : une étude pionnière sur la SLA (maladie de Charcot)

What is ALS or Charcot's disease? Amyotrophic lateral sclerosis (ALS), also known as Charcot's disease or Lou Gehrig's disease, is a neurological disease characterized by degeneration of motor neurons that control muscle movement, leading to progressive muscle paralysis and death due to respiratory failure. Motor disability may be associated with other signs affecting the digestive tract, metabolism and immune system. The clinical and evolutive expression of ALS varies from patient to patient, with a median survival of 2 years and extremes from 6 months to 15 years, although these differences are not fully understood. In the vast majority of ALS cases, the cause is unknown. No drug has proven effective in treating ALS, the symptoms or the progression of the disease. The purpose of the TECS association and the ALS Microbiota study In 2020, our association "Tous En Selle Contre la SLA" (TECS) was created on the initiative of a core group of ALS patients and their families to support research into the links between ALS and the gut microbiota, and the development of new therapies, as this area of research is still largely unexplored. To do this, TECS chose to work with a committee of volunteer experts, doctors and researchers in the field of microbes and gut microbiota, from INSERM (French National Institute of Health and Medical Research), INRAE (French national institute for agronomic research, food and the environment), and Université Paris-Saclay. 3 years later, thanks to our determination, the TECS association has carried out the first French kinetic* and comparative study of the gut microbiota of ALS patients and their relatives, sharing the same environment. *Monitoring changes in the microbiota in line with disease progression The "SLA Microbiota" clinical trial, whose investigators are Professor Jamila Faivre (INSERM) and Doctor Joël Doré (INRAE), was launched in 2022 after obtaining regulatory and ethical authorizations (approval from the Comité de Protection des Personnes Ile de France II obtained on March 24, 2022). Stool samples are taken from patients and their relatives (controls) at regular 6-month intervals over a 2-year period. The study is currently funded solely by donations to the association. However, despite a network of faithful and regular donors, this is not enough to guarantee the completion of the entire study. What stage has the study reached? The study comprises five phases (T0, T1, T2, T3, T4), spaced at approximately 6-month intervals, corresponding to the frequency of sample collection. The total cost of each phase is approximately €20,000. Funding for stages T0 and T1 has already been guaranteed by the TECS association. Stage T0 covers the collection of clinical data and the first sampling cycle. It ran successfully from August 2022 to February 2023, and included 60 patients and 54 controls. Sequencing of the fecal microbiota from stage T0 is currently underway. Stage T1 covers the second sampling cycle. It was launched in April 2023 and has been fully funded Stage T2 covers the third sampling cycle and is scheduled to start in October 2023. Yet to date, despite our association's best efforts, we do not have the necessary funds to complete stage T2, nor the following stages (T3, T4). That's why we've decided to launch a crowdfunding campaign. Our objective is straightforward: to raise 20,000 euros to fund the T2 stage of the study, which is our priority. Thanks to your support, we are confident of reaching this goal.