SYNAPSE, they are scientists and artists who combine their work with the ambition to improve the well-being of people suffering from a rare and little-known disease.

A hybrid theatrical object, SYNAPSE is written based on testimonies from professionals who support people with Angelman Syndrome. SYNAPSE will be played, filmed and then shown to these professionals, in order to lead them to deep reflection and then to awareness: that of the overall care of the people they support and the complexity of communicating with them.

Entre les Actes is responsible for creating the project, according to a scientific research report carried out by the University of Lorraine. SYNAPSE's audiences will be medical-educational professionals but also health institutions and directors of specialized establishments.

Angelman Syndrome is a rare disease caused by an alteration of chromosome 15. People who suffer from it present severe developmental delay (deprivation of speech despite an intense desire to communicate, behavioral and eating disorders , hyperactivity, epileptic seizures, etc.) whose consequences require placement in specialized establishments throughout their life.

However, the care of people affected can And must be improved to ensure their well-being, relieve families, re)cognize and (re)mobilize accompanying staff.

In her scientific research report, Sophie Arborio outlines specific avenues for improvement, thanks to the twenty-five interviews carried out within the eight establishments (Establishments for Children and Adolescents with Multiple Disabilities), CME (Medico-educational Centers), IME (Institut Médico -educational) and MAS (Specialized Welcoming Homes) in February and March 2021. It defined four areas of action: professional training and experience, relationships with families, communication with people suffering from Syndrome. 'Angelman and the role of establishments.

Entre les Actes delved into this report so that SYNAPSE embodies the words of those accompanying us and gives voice to their questions, their doubts, their hopes, their motivations. A theatrical, experimental, “in vivo” object, SYNAPSE aims to encourage these professionals to engage in a training course.

With SYNAPSE, we continue our research and our artistic reflections around theater (and other forms) of testimonies and the mediation of scientific research work through the prism of art.

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