Bauby’s determination to overcome difficulties that would send most of us into irretrievable depths of despair are expressed in the words: ‘I have decided to carry on my fight against fatality by setting up the first association in the world for people suffering from Locked-In Syndrome.’ So he created ALIS (Association du Locked-In Syndrome) and became its first president, stating his objectives thus: ‘To collect all the present information about the syndrome, to allow sufferers to communicate better with one another, to create means of breaking the solitude and isolation, and to make them
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