Liberal leader Justin Trudeau (R) dumps a bucket of ice water onto Liberal MP Sean Casey for the ALS ice bucket challenge during a break in the Federal Liberal summer caucus meetings in Edmonton August 19, 2014.
Liberal leader Justin Trudeau (R) dumps a bucket of ice water onto Liberal MP Sean Casey for the ALS ice bucket challenge during a break in the Federal Liberal summer caucus meetings in Edmonton August 19, 2014. Reuters/Dan Riedlhuber/File Photo

What critics dismissed as “lazy activism,” the viral Ice Bucket Challenge, has in fact raised US$115 million (AU$153 million) to advance research on Amyotrophic Lateral Sclerosis (ALS) treatment.

Every drop indeed counts as US$77 million (AU$102 million) out of the US$115 million (AU$153 million) donated through the “ALS Ice Bucket Challenge” during an eight-week period in 2014 has been dedicated to advancing research for treatments and cure for Lou Gehrig’s disease.

In an infographic, the ALS Association said it has funded over 150 active research projects since the ALS Ice Bucket Challenge went viral on social media. World leaders, celebrities, athletes, billionaires and artists in the likes of former US President George Bush, Ophra Winfrey, LeBron James, Bill Gates, Jeff Bezos, Mark Zuckerberg, Steven Spielberg and Lady Gaga, who gave into the challenge and dumped a bucket full of ice cubes on their heads in support of the advocacy. Those who refused to do so were given the option to donate to the ALS Association.

Ice Bucket Challenge infographic (from The ALS Association)
Ice Bucket Challenge infographic (from The ALS Association) alsa.org

The ALS Ice Bucket Challenge went viral on Facebook and the challenge spread across the globe. According to the ALS Association, it has provided US$7.5 million (AU$10 million) to the ALS Research Program of the US Department of Defense to study why veterans are twice as likely to develop the disease that affects nerve cells in the brain and spinal cord.

The highlight was the US$1 million (AU$1.3 million) donated to the University of Massachusetts Medical School’s Project MinE that was able to identify NEK1, a gene that is responsible for the neurodegenerative disease.

“The discovery of NEK1 highlights the value of ‘big data’ in ALS research,” said Lucie Bruijn, chief scientist at the ALSA told Fortune magazine. “The ALS Ice Bucket Challenge enabled The ALS Association to invest in Project MinE’s work to create large biorepositories of ALS biosamples that are designed to allow exactly this kind of research and to produce exactly this kind of result.”

As with every medical research, the search for funding doesn’t stop. The ALS Association said US$2 billion (AU$2.7 billion) is needed to develop one new drug to cure ALS. So far, there are at least nine global collaborations that have resulted in two new antisense drugs targeting SOD1 and C9orf72 that are going into clinical trial in patients.

“With the Ice Bucket Challenge donations, the ALS Association was able to then double down on its investment in antisense technology that targets C9orf72, the most common genetic cause of ALS. It will likely enter clinical trials early in 2017,” said Dr. Don Cleveland of Cleveland Lab in La Jolla, California.

Click here to donate to the ALS Association.

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