In 2014, the Ice Bucket Challenge took over the internet. Famous names such as Mark Zuckerberg, Kim Kardashian, Bill Gates and Oprah all participated in the fundraising scheme, which asked participants to dump ice water on themselves, or donate $100 to an ALS organization.
The ALS Association reported receiving $115 million in donations in eight weeks due to the challenge, a massive influx much larger than previous fundraising efforts.
Now, the funds raised by the challenge appear to have helped fund breakthrough research. University of Massachusetts Medical School researchers received $1 million from the ALS Association to Project MinE.
Scientists working on the project recently announced the discovery of a gene linked to the development of ALS called NEK1.
In a letter to the journal Nature Genetics, scientists from the project shared the correlation NEK1 shared with familial and sporadic ALS. “In total, we observed NEK1 risk variants in nearly 3% of ALS cases,” the letter read.
The population affected by NEK1 is small, but the research is considered critical to the understanding of both familial and sporadic ALS, according to Project MinE founder Bernard Muller.
“The ALS Ice Bucket Challenge enabled us to secure funding from new sources in new parts of the world,” Muller said. “Thankfully, The ALS Association brought Project MinE to the United States. This transatlantic collaboration supports our global gene hunt to identify the genetic drivers of ALS. I’m incredibly pleased with the discovery of the NEK1 gene adding another step towards our ultimate goal, eradicating this disease from the face of the earth.”
Amyotrophic lateral sclerosis, also known as motor neurone disease or Lou Gehrig’s Disease, is a disease affecting the nerves in the brain and spinal cord. People with ALS experience progressive nerve damage in those organs that slowly reduce the ability to eat, speak, breathe or move.
There is no cure for ALS, but researchers, such as those looking into at home monitoring devices, are actively looking into genetic or physiological ways to treat and target ALS.
Belinda Cupid, the head of research for the UK Motor Neurone Disease Association, praised the contributions of the NEK1 gene’s role in developing ALS.
“This discovery identifies exactly what one of those contributing factors may be towards developing MND,” she said. “It’s a small thing that won’t cause MND on its own but it makes us understand a little bit more so we can develop treatments quicker.
Cupid praised the efforts of the ice bucket challenge for drawing attention to ALS. “In the UK, we put £5 million of the Ice Bucket Challenge money into MND research,” she said. “I’ve never seen so much money raised in such a short amount of time for MND. It was phenomenal.”
“Two years might seem like a long time ago to a lot of people who don’t have a connection to Motor Neurone Disease,” Cupid explained. “But to people living with MND and researchers who are working in this area, the Ice Bucket Challenge feels like it was two minutes ago.”
Over 17 million people participated in the Ice Bucket Challenge, which was heavily supported by celebrities and by the general population. Dr. Lucie Bruijin, Chief Scientist at the ALS Association, said the challenge directly contributed to the discovery of at least three genes related to ALS.
“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,” he said.
In 2014, many critics of the Ice Bucket Challenge referred to the fad as ‘slacktivism’ and accused participants of merely doing the easy challenge part without donating.
Ben Consinski, writing for The Huffington Post, said the “The viral nature of this almost hurts ALS due to the substitution of potential donations with a social post; internally, people think they have donated when in turn they’ve only posted.”
However, Bruijin’s claims directly contradict this warning and indicate that the challenge was a successful fundraiser for ALS researchers globally.