Fighting ALSThe success of the Ice Bucket Challenge
For all those who doubted that pouring a bucket of ice water over your head could make the world a better place, doubt no longer. Six years after the hype, the ALS Ice Bucket Challenge has financed the development of a drug for the deadly disease it targeted. Read More
Both celebrated and ridiculed: The Ice Bucket Challenge, a fundraising campaign for the neurological disease ALS, went round the world on social media in the summer of 2014. Now six years later, the proceeds have been used to develop an effective drug.
Former U.S. President George W. Bush took part, and Bill Gates’ teeth also chattered as one of the celebrities who filmed themselves pouring buckets of ice water over their heads, posting the videos on their various social media channels and tagging one or two other celebrities, nominating them to follow their lead. And the snowball started rolling.
The ALS Ice Bucket Challenge wave that swept across the world in the summer of 2014 was initiated in the USA by patients suffering from a fairly unknown illness at the time: amyotrophic lateral sclerosis (ALS), a degenerative disease of the motor nervous system. It is an insidious disease that destroys nerves and paralyzes muscles. As it progresses, those affected can no longer move and face increasingly difficulty in swallowing, breathing and speaking. There is no cure for ALS, which inevitably leads to death.
Despite its severity, ALS had little public presence for a long time. Some might have known it as the disease famous US baseball player Lou Gehring was diagnosed with or the condition that forced physicist Stephen Hawking into a wheelchair trapped in a body with limited functionality.
The Ice Bucket Challenge was intended to attract more attention – and donations.
The causes of ALS are still unknown and only around one to two out of every 100,000 people worldwide contract it every year. Research into such rare diseases is costly and depends on funding, as do the self-help organizations that council and support those with the disease. The challenge made use of a very direct appeal, asking anyone with the guts to pour a bucket of ice water over their head to donate just 10 US dollars to an ALS Association. Those who lacked the courage were asked to donate 100 US dollars.
1.2 million in the first four weeks alone
Though there was some criticism of the Ice Bucket Challenge – ranging from concerns that the cold water could be harmful to the health to doubts about the point of the endeavor, as skeptics often saw the video clips as mere self-promotion – the campaign was a great success for ALS associations.
“The summer of 2014 was a ‘summer of the century’,” the German Muscular Dystrophy Society (DGM) reports. At first, requests from members of the press asking for details about the disease they planned to cover flooded in.
Then the money transfers started pouring in: In the first four weeks alone, after the initial telethon wave had rolled over to Germany, the DGM received donations from 40,000 individuals that amounted to 1.2 million euros, and by the end of 2014 the total had reached 1.3 million euros. And that was to just one ALS organization in Germany.
The ALS outpatient clinic at Berlin’s Charité Hospital also received 1.6 million euros in donations. Worldwide the most donations flowed into the USA where the ALS Association, which had co-initiated the Challenge, collected around 100 million US dollars that summer.
Drug breakthrough thanks to the Ice Bucket Challenge
Now, six and a half years later, the effect of the Ice Bucket Challenge is becoming even more apparent. U.S. ALS research institutes have used some of the 200 million U.S. dollars raised in donations so far to finance a study program at Harvard University investigating the effect of a special new drug, which has now revealed the first promising results. In the CENTAUR study, scientists were able to prove that the drug tested significantly slowed the progression of ALS in nearly 90 patients and had a positive effect on muscle strength and vital capacity of the lungs. Study leaders have called it “a milestone in ALS research”.
The drug significantly slowed the progression of ALS and had a positive effect on muscle strength and vital capacity of the lungs.
The study will be continued and expanded, and additional data on a possibly prolonged life expectancy are expected in the coming months. The next step would then be approval in the USA. Meanwhile, efforts around the world continue, ice bucket or no ice bucket. “Only when ALS can finally be cured,” the DGM says, “will we declare our ‘challenge’ over.”