Bons Baisers de Huntingtonland", La Briqueterie, 2016 © Lika Banshoya
Sciences Health, 15 March 2018
Bons Baisers de Huntingtonland", La Briqueterie, 2016 © Lika Banshoya

Huntington disease

Investigation by Valérie Pihet
Summary

Huntington’s disease is a rare and incurable genetic disorder that leads to cognitive, motor and psychiatric degeneration, and to a gradual loss of autonomy and death. In 2012, Valérie Pihet and writerAlice Rivières founded the association Dingdingdong, whose mission is to create a framework for knowledge production that gathers personal accounts to articulate them into new, pragmatic proposals, with the goal of helping users – people with the disease or carriers of it, family and loved ones, caregivers – live the disease with dignity. The ambitious scope of the project demands that users, researchers (doctors, philosophers, sociologists, historians…) and also artists (visual artists, writers, videographers, choreographers…) find innovative ways of collaborating to explore an illness still considered an unknown planet, and to uncover narrative forms that do their experiences justice as they chronicle their adventure in progress.