Even those who lead a life away from social media noticed the latest trend on the Internet by the end of August 2014 at the latest: people, including many celebrities, poured a bucket of ice water over their heads.

The "Ice Bucket Challenge" had strayed through the internet before, but by August the silliness took on a seriousness that catapulted it to a higher level and helped the campaign to become hugely viral.

Eva sleeper

Editor in the "Life" department of the Frankfurter Allgemeine Sunday newspaper.

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Less than two and a half years earlier, the then 27-year-old American Pete Frates had been diagnosed with the incurable nerve disease ALS.

As a player, then captain, on the Boston College baseball team, he had achieved some popularity in the first half of the noughties.

In 2014, Frates, along with his pal Patrick Quinn, who also has ALS, linked the Ice Bucket Challenge to the neurological condition by encouraging donations.

Anyone who completed the icy challenge could nominate up to three other people.

Those who did not respond within 24 hours were encouraged to donate $100 to the ALS Association of the United States (ALSA).

Mark Zuckerberg, Bill Gates, Lady Gaga took part

Most accepted the challenge, posted short videos of how they poured or had the ice water poured over their heads – and made additional donations.

It can be assumed that contributors such as Facebook inventor Mark Zuckerberg or Microsoft founder Bill Gates jumped more than $ 100.

Incidentally, the best-known objector was Barack Obama, then US President.

The most powerful man in the world, actually known for his easy-going nature, was probably afraid of producing an image that shows him as a drowned poodle.

The trend quickly spilled over into Europe and by the end of 2014 around $200 million had been raised worldwide, most of it in the US.

ALSA, to which most of the donations went, was able to invest unusually large sums in research into ALS almost overnight.

ALS stands for "Amyotrophic Lateral Sclerosis" and is a chronic nerve disease.

It causes the motor nerve cells in the brain and spinal cord, also known as motor neurons, to perish, meaning that the brain can no longer control the muscles.

Patients lose the ability to move their limbs, swallow, breathe independently, and speak.

For many of those affected, communication only works via a voice computer, which they control by eye movement.

They need round-the-clock care from nurses.

The perception of temperature and pain, sight, hearing, smell and taste, on the other hand, remain unaffected in most cases, as does the ability to think and thus the perception of one's own physical deterioration.

The sometimes very rapid progression of nerve damage is also frightening.

Pete Frates, until his illness a prime example of the sporty radiant man, was already dependent on a wheelchair eight months after the diagnosis in March 2012.

The disease often occurs after the age of fifty, but people in their twenties or thirties are also affected time and again.

The average lifespan is two to five years from diagnosis, but there are also atypical courses, such as that of the well-known British physicist Stephen Hawking, who died in 2018 at the age of 76, although the disease was discovered in 1963.

With the exception of the rare hereditary forms, the cause of ALS is still unknown.

These were not discovered until 1993, but the disease received its current name as early as 1874. About three out of 100,000 people develop ALS every year;

a total of ten out of 100,000 are affected.