In the US, the mastermind of the Ice Bucket Challenge died: how he changed the world

Photos from the family archive of the Senerchia family

25 November in the US, died Anthony Senerchia, who suffered from amyotrophic lateral sclerosis. It is thanks to him that the world paid attention to this disease and united in a charity flashmob with douche of icy water, writes Time.

Ice Bucket Challenge started in 2014 year after the wife of Senerchia, professional golfer Chris Kennedy published a video in which he challenged her. A relative offered to pour a bucket of cold water on himself. The idea was that the cold will help to feel the stiffness of the muscles, which is well known to those who suffer from this sclerosis. In the event of a disease, motor neurons are affected, leading to paralysis and muscle atrophy.

According to the rules, participants of the flash mob should have poured a bucket of ice water on themselves and donated $ 10 to a specialized charitable foundation. ALS Associationand also challenge three more participants. Those who refused to pour out the water should have transferred $ 100 to the fund.

Gradually, the flash mob became popular in their small town Pelem. And then the famous baseball player Pete Freits took part in it, and he was also diagnosed with sclerosis. The video quickly spread, and the flash mob was joined by stars, actors, and then the whole world.

В Air force calculated that only Facebook more than 17 million video clips were uploaded, with people pouring ice water over them. Many celebrities took part in the flash mob, including the founder of the social network Mark Zuckerberg.

Flashmob Ice Bucket Challenge helped raise $ 115 million despite criticism. Opponents of the rally claimed that, against the background of its mass character, the connection between pouring cold water on itself and its charitable goal was lost.

In total, the money collected went to 6 research. A group of scientists calling themselves Project MinE, conducted the largest study in history of hereditary amyotrophic lateral sclerosis and published its results in the journal Nature Genetics.

More than 80 researchers in 11 countries have been searching for genes associated with the risk of this disease.

Identifying the NEK1 gene means that scientists can now develop gene therapy to treat amyotrophic lateral sclerosis. Although the hereditary form accounts for only 10% of all cases of this disease, scientists believe that genetics plays a role in a much larger percentage of cases.

In the US, about 30 thousands of people suffer from “Lou Gering's disease”. For comparison, Alzheimer's disease was diagnosed in more than 5 million people. Under such conditions, as the initiators of the flash mob said, it is simply unprofitable for pharmaceutical companies to engage in research on the disease.

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