A new drug developed with donations gathered at the ``Ice Bucket Challenge'' wearing ice water is approved

by Global Panorama

In the summer of 2014, the ' Ice Bucket Challenge ', which supports with ice water under the pretext of soliciting donations for research on the intractable disease amyotrophic lateral sclerosis (ALS) , became popular worldwide. While many celebrities participated, there were criticisms that ` ` we are making a fuss while ignoring patients who are suffering. It came out years later. And in September 2022, the ALS Association said, 'The $2.2 million (approximately 300 million yen) in funds raised from the Ice Bucket Challenge will be important funding for the development and clinical trials of new drugs approved for the treatment of ALS. We have provided the

FDA Approves First ALS Treatment Funded by Ice Bucket Challenge | The ALS Association
https://www.als.org/stories-news/fda-approves-first-als-treatment-funded-ice-bucket-challenge

ALS Ice Bucket Challenge helped fund the development of a new drug for treatment : NPR
https://www.npr.org/2022/10/01/1126397565/the-ice-bucket-challenge-wasnt-just-for-social-media-it-helped-fund-a-new-als-dr

ALS drug Relyvrio nets FDA approval despite some scientists' warnings : Shots - Health News : NPR
https://www.npr.org/sections/health-shots/2022/09/30/1126267087/als-drugs-approval-draws-cheers-from-patients-questions-from-skeptics

The Ice Bucket Challenge, which became popular around the world around the summer of 2014, is to choose two options: `` donate to ALS research '' or `` wear a bucket of ice water over your head ''. The intention was to spread awareness of ALS by having people who donate or wear ice water nominate the next person to do the Ice Bucket Challenge. Not just popular among SNS users, Microsoft founder Bill Gates, Meta (then Facebook) Mark Zuckerberg, Google's Larry Page, Amazon's Jeff Bezos, Apple's Tim・Celebrities such as Mr. Cook and the singer Lady Gaga donated ice water to the donation, which attracted a lot of attention.

A mysterious campaign in which celebrities wear ice, such as the CEO of Google, Apple, MS, FB and Horiemon, is underway - GIGAZINE

On the other hand, the ice bucket challenge was criticized, saying, ``Isn't it inappropriate because there are many people who are just making fun of themselves rather than helping people with intractable diseases?'' However, due to the effect of the ice bucket challenge, donations of 15 million dollars (about 2.2 billion yen) have been collected from all over the world, and in 2016 when the epidemic of the ice bucket challenge has completely subsided, a research team at the University of Massachusetts School of Medicine announced that it had discovered the causative gene of ALS in a project using research activity expenses of 1 million dollars (about 140 million yen) donated by the ALS Association.

Donations collected at that ``ice bucket challenge'' that wears ice water lead to great results - GIGAZINE

By Anthony Quintano

About 67% of the donations collected at the Ice Bucket Challenge were distributed to research institutions on ALS as research subsidies, and it was expected that this donation could advance the development of ALS treatment methods. Six years later, at the end of September 2022, the US Food and Drug Administration (FDA) approved a new drug, saying, ``The $2.2 million (about 300 million yen) fund raised from the Ice Bucket Challenge will be used this time. Assisted in new drug development and clinical trials,' the ALS Association announced. “This is a victory for the entire ALS community coming together to advocate for early approval of a treatment,” said Karaniet Baras, president and CEO of the ALS Association, noting that funding from the Ice Bucket Challenge is “a win for ALS. It dramatically accelerated the fight,' he said.

The FDA-approved new drug 'Relyvrio' is not a fundamental remedy for ALS, but it can greatly delay the progression of symptoms. In a study of 137 patients by Amylyx Pharmaceuticals , a pharmaceutical company based in Cambridge, Massachusetts, researchers showed that the new drug Relyvrio could extend patients' lives by five to six months or more. rice field. However, some researchers have expressed skepticismabout Relyvrio due to the lack of clinical trials and its approval based on a single study. .

According to the ALS Association, the Ice Bucket Challenge funds have funded 130 research projects and 40 potential treatments in 12 countries, and not only this new drug approval, but further research advances. It is expected.