French musician DJ Pone, suffering from Charcot’s disease, continues to compose thanks to special software that captures the movements of his retina.
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Posted on 09/05/2021 9:57 AM Updated 09/05/2021 10:08 AM
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The Tokyo Paralympic Games end on Sunday, September 5. That same day, the closing ceremony of the event will take place as well as the passing of the torch between Tokyo and Paris, which will organize the next Olympic and Paralympic Games in 2024. It is the French musician Pone who will put this symbolic moment to music , thanks to a mix he composed for the occasion.
The founding DJ of the Marseilles hip-hop collective Fonky Family suffers from Charcot’s disease, a neurodegenerative pathology in which the neurons that control the muscles are destroyed, causing progressive paralysis of the entire body. But the French DJ continues to compose thanks to special software, which he detects the movements of his eyes. This is the same technology used by physicist Stephen Hawkins, who also has Charcot’s disease.
For six years, Pone, whose real name is Guilhem Gallart, has not given up on music, but his life has changed since he was diagnosed with the disease that was eating him away. Without the possibility of moving, getting up or speaking, he communicates with his wife and children thanks to the software which allows him to translate the movements of his eyes into words. It is this same software that allows him to compose, from his bed. “The message he wants to convey is that anything is possible, explains his wife Wahiba. So with a project such as the closing ceremony of the Paralympic Games, his message takes on its full meaning.”
Imagine that while he is in a room, in a house in the Tarn from which he cannot leave, he makes his message resonate throughout the world, it is wonderful.
Wahiba, wife of Pone
Pone therefore becomes a spokesperson and ambassador. He claims to watch the Paralympic Games a lot and has composed new songs for the occasion. This fan of Kate Bush continues to create, as for his last project released before the summer with a charitable ambition: “Listen and Donate”. The couple also hope to make their fight for home care heard. During the passing of the torch between Tokyo and Paris, Pone will therefore mix only with his eyes and his song will be broadcast at the Trocadéro and around the world.
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