ALIS, an association for the locked-in syndrome governed by the French bill of 1901, was created in March 1997. The idea and the implementation are due to Jean-Dominique Bauby. He himself was diagnosed with the locked-in syndrome in December 1995, and wanted to show the world that this pathology, which impedes movement and speech, does not prevent patients from living.

He has proven it in an extraordinary book which he wrote with his left eyelid alone, "Le Scaphandre et le papillon" (Ed. Robert Laffont). The latter became a best-seller only weeks after his sudden death on March 9, 1997.