ALS came as a shock to us: we had heard about the Ice Bucket Challenge and its purpose but that was it. Of course, we looked for information frantically and quickly understood that there was not much to be done, apart from making sure that Valéry was as well cared for as possible with that kind of disease. This quickly meant weekly appointments with speech therapists and physiotherapists. A few months later we also had to add daily nurse visits… When Valéry passed away in 2016, we knew we had to do something. We spent quite some time thinking about how to address the issue and we came to the conclusion we wanted to boost research. We came in contact with the KU Leuven in January 2018: we felt they were the right partners for us. Professor Philip Van Damme heads the Laboratory of Neurobiology and through our various actions we want to collect money to help their research.