Laurence Tiennot-Herment, this is her fight – Libération

The president of the Telethon dedicates her life to research, in memory of her son, who died at the age of 20 from Duchenne muscular dystrophy, which today has its first hopes of treatment.

A rock. “It’s the fight of a lifetime.” There is no room for anything else, she barely allows half a day every two weeks to see her companion. And the rest of the time, fight. “I only close my cell phone on a plane, otherwise I answer” adds Laurence Tiennot-Herment. She is like this: indestructible, monastic to the extreme. President of the Telethon since 2003, she is driven by a visceral commitment: to “medically” avenge her son, who died at the age of 20 from Duchenne muscular dystrophy. While the Telethon takes place this weekend, there are these days as the beginning of a response to this challenge, even a justification for the fight of one's life, with the first promising results in gene therapy against the disease which took his son. A wink all the more powerful since Duchenne muscular dystrophy is emblematic of the Telethon, the one from which Bernard Barataud's son, an essential personality in this story, also died. “We are at a pivotal moment,” she analyzes.

A little flashback: in 1986, a young American researcher isolated the Duchenne gene, and this discovery led Bernard Barataud,