New York (AFP)
The American Peter Frates, who popularized in 2014 the "challenge of the bucket of ice water" to draw attention to the disease of Charcot, died Monday at age 34 from this degenerative disease, announced his family.
Peter Frates was not at the origin of this challenge, which was to receive a bucket of iced water on his head, but it was he who made it, in spring 2014, a symbol of the fight against this disease .
He had learned in 2012 that he was suffering from Charcot disease, also known as Lou Gehrig's disease, or amyotrophic lateral sclerosis, which results in progressive paralysis of the muscles.
The "Ice Bucket Challenge" has gradually ignited social networks, to the point that thousands of people have practiced, among them celebrities.
From Oprah Winfrey to Jeff Bezos, LeBron James, Bill Gates, Steven Spielberg and Mark Zuckerberg all posted a video of their feat.
The ALS Association, which supports people with Charcot disease and medical research estimates that donations related to this campaign reached $ 115 million.
According to the organization, these funds led to the discovery of five new genes related to the disease and facilitated the funding of new clinical trials for treatments.
To date, there is no cure for the disease, which causes, on average, death within 3 to 5 years after diagnosis.
Peter Frates, a former high-level baseball player, married with a little girl, had become the symbol of the fight against Charcot's disease.
Although more and more diminished, he moved as much as possible to attend public events and remind everyone of this rare disease, which affects about 16,000 people in the United States and a comparable number of people in Europe. , according to ALS Association.
"It was a glimmer of hope for everyone," said his family in a statement posted on its official website.
© 2019 AFP