Walking for LAMAs, 1 year on, a promising success!

Workshops to learn more about the issues surrounding rare genetic diseases

The project took place in 3 stages. Firstly, "little European researchers" courses were designed for over 600 pupils and schoolchildren from Fuveau (13), involving some 70 researchers, teacher-researchers, students and university staff over 4 days. The courses explored issues related to rare genetic diseases (and in particular LAMA2 DMC), muscle and movement, adapted sports and inclusion (the content is available and reusable for other schools!). A "Marchaton" solidarity walk raised over €15,000. Finally, a conference for the general public was held on advances in research into this rare disease, providing an opportunity to raise awareness among students and families of the profession of researcher.

Two projects to advance research

Thanks to the funds raised, 2 projects can now be co-financed:

• A project led by Leslie Caron at Marseille Medicals Genetics, who is working on the creation of pluripotent stem cells to mimic the mutations caused by the disease, so as to better understand its consequences and possibly test drug molecules. This project - also co-financed by the MarMara Institute through its open call for patient associations - will enable us to work with cells from 6 patients to accelerate this research.
• The purchase of a microscope for Valérie Allamand's laboratory at the Institut de Myologie in Paris, facilitating the exploration of cells in culture (produced, for example, by Leslie Caron).

These two projects will also help to strengthen collaborations between these two teams and initiate the emergence of research in France into this rare, orphan neuromuscular disease.

Without the participation and enthusiasm of everyone involved in this OpenLab project, these projects would not have been possible. Not to mention the importance in terms of awareness, exchanges and impact that these actions have had on students, schools and families. Many thanks to them, and a fine example of solidarity from the whole Aix-Marseille community!

To find out more about the different projects run by the LAMA 2 France association.