The acronym “ARSACS” enters the life of Susanna de Luca and Paolo Arrigoni when their young child was diagnosed with ARSACS. Paolo joined the Board of Directors of the Ataxia Charlevoix-Saguenay Foundation in 2018 and, after having participated in the international symposium on ARSACS in Montreal, concluded that a point of reference and support was necessary in Europe, especially since several cases have been identified.

In December 2018, these parents created the ARSACS  Organizzazione Di Volontariato (ARSACS ODV) based in Milan, Italy. Like the Ataxia Charlevoix-Saguenay Foundation, it is an organisation of volunteers, with a legal status, working in close collaboration with the Foundation. ARSACS ODV wishes to increase the awareness of ARSACS in Europe, to be a point of reference and support and to help finance the research projects via the Foundation.