Ice Bucket Challenge helps fund new ALS drug


By AGENCY

Actors Henry Cavill (seated, left) and Amy Adams were among the celebrities who took part in the Ice Bucket Challenge while on the set of Batman v Superman: Dawn of Justice in 2014. — AFP

Challenges have become a staple feature on social networks.

While some of them are downright dangerous, others are intended to have a greater purpose.

So, can they actually be useful?

Well, one such challenge actually facilitated the financing of a drug that is capable of slowing down the progression of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease.

Perhaps you remember that back in 2014, the Ice Bucket Challenge was spreading across all social networks.

The idea was to pour a bucket of ice water over one’s head in a bid to collect donations for the ALS Association, which funds research on this chronic, progressive disease.

Many celebrities got on board the movement across the various platforms, nominating three other celebrities to take on the challenge themselves within 24 hours and reach even more people online.

Mark Zuckerberg, Bill Gates, LeBron James and George W. Bush all took up this challenge, originally created by Pat Quinn and Pete Frates, two men with ALS who died in 2020 and 2019 respectively.

The Ice Bucket Challenge raised US$115 million (RM553 million) for the association, thanks to more than 17 million videos made.

Out of this substantial sum, some US$2.2mil (RM10.2mil) was used for the development of a new drug that combines two molecules, sodium phenylbutyrate and taurursodiol, that claims to slow down the progression of ALS.

And this drug, also known as AMX0035, was approved by the US Food and Drug Administration (FDA) on Sept 29 (2022).

“The approval of AMX0035 is further proof of how the Ice Bucket Challenge dramatically accelerated the fight against ALS,” said ALS Association CEO and president Calaneet Balas.

She also paid tribute to the two men who launched the challenge: “We are thinking of Pat Quinn and Pete Frates who ... changed the trajectory of ALS forever.”

In addition to partially funding a drug to fight the disease, the social media challenge also put the spotlight on the work of researchers.

After an independent study in 2019, 84% of respondents confirmed that donations from the challenge accelerated their project, while 72% were even able to take advantage of the attention to boost their chance of receiving additional funding. – AFP Relaxnews

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