Malika Ménard, Rayane Bensetti, Franck Dubosc… Many public figures have had the painful experience of seeing one of their family members suffer from Charcot’s disease.
Also called amyotrophic lateral sclerosis (ALS), this disease is characterized by a progressive loss of motor neurons in the brain and spinal cord. A rare disease which severely reduces life expectancy (20% of those affected live 5 years or more after diagnosis) and for which there is unfortunately no cure.
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A touching book
A neurodegenerative disease that Mario Barravecchia highlighted in particular in his first book entitled “My father, my battle – From song to Charcot’s disease”. In this book, which will be published on May 17 by Éditions Prisma, the former candidate of the “Star Academy” indeed talks about his success, but also about his relationship with his father, who suffers from Charcot’s disease.
A work that the latter wished to discuss this Friday, April 28, 2023, via an Instagram post: “I’ve been waiting for this moment for a long time… It took me a long time to decide to write this book because it’s an important stage in my life and a delicate cause that I want to defend with strength and determination. The right to die with dignity”he began.
And to add: “This is an intimate, moving and full of humanity testimony to my relationship with my father. A colorful relationship with Pino, this Sicilian immigrant who arrived in Belgium in the 1970s. In 2009, I learned that he has Charcot’s disease which killed him after 6 months. My father who was also my first producer and who did everything to make my dream come true”, writes Mario Barravecchia. An important book for the artist at the time or “a circular petition to make Charcot’s disease a major national cause in 2023, and where Emmanuel Macron launched a citizen consultation on assisted end of life”. A beautiful fight.
LZ