After the Ice Bucket Challenge: what to do with all those millions of ALS? – Volkskrant

By: Ellen Fisher – 09/13/14, 11:54

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Is the global success of the Ice Bucket Challenge, where money was raised for ALS muscle, but where to? And how will their patients ‘benefit’?

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The Hague Netherlands ALS Foundation office is so busy that director Gorrit-Jan Blonk has ceded his room. voluntarily On his desk are boxes with envelopes at the conference table staff is working to fill it with letters thanking them. In the next room staff of an ICT business process thousands of one-off permissions, another door down the website is updated. Numerous companies have called to offer their services. Free The permanent team of five employees and two temporary workers is temporarily doubled in recent weeks with volunteers.

Viral chain letter
It was the summer of the Ice Bucket Challenge, which has Blonk conscience. He was just two months, the director of the ALS foundation when the campaign set up by friends of an American ALS patient reached the Netherlands; became a viral chain letter over the world and attracted a philanthropic sensation. Bill Clinton to supermodel Kate Moss, Kermit the Frog, Christmas to the full selection of Ajax and their own neighbors, all of them tipping a bucket of ice water over their heads, put the video on the Internet and challenged others to be the same within 24 hours do. In just over a month’s time, the ice bucket-films were viewed on YouTube a billion times. ALSA, the American ALS organization, just took out all 85 million of them, the Dutch ALS Foundation, the counter at over one million.

That freighter donations provides a new challenge, one that is much more complicated than a bucket of water: where to spend all that money on? Donors seem to expect that the retrieved millions going to make the difference and that patients can be cured quickly, but now scientists dampen those expectations. ALS for years was such a mysterious illness that scientific research is rather retarded, said ALS expert Leonard van den Berg, professor of neurology at the Brain Center at UMC Utrecht. The cause of the disease is completely unclear, and without this knowledge it is difficult to find a cure. The road to effective treatment, he means is far

_{Today in the Volkskrant:. Pitfalls of the ice bucket sensation}

8.8 million views on YouTube: Canadian hockey player Paul Bissonnette dropped on top of a mountain of ice water thrown over him from a helicopter

18.2 million. views: Actor Charlie Sheen devised his own variant, returning a pan with banknotes to above his head.

viewed 19.9 million times: Microsoft founder Bill Gates and patron first designed his own ice bucket shower.