Two years later, the Ice Bucket Challenge contributes to breakthrough in ALS research

Posted August 14

Remember two years ago when shaky videos of celebrities, friends and families dumping buckets of icy water on each other's heads took hold of social media and local news broadcasts?

While it may seem the Ice Bucket Challenge was mostly just a silly way to douse loved ones in freezing cold water and consequently raise awareness of a disease, it has actually contributed to a major breakthrough in amyotrophic lateral sclerosis (ALS) research.

DNA research group Project MinE announced this week that it found a new gene, NEK1 that is common among ALS patients. The National Institute of Neurological Disorders and Stroke estimates that 90 to 95 percent of ALS cases occur randomly and "with no clear associated risk factors," so the gene identification could help researchers develop better drugs and medications for treatment.

According to CNN, NEK1 is the third ALS-related gene discovered with funds raised by the Ice Bucket Challenge.

The challenge required people to either film themselves dumping icy water on their heads or donate to ALS research, which had critics rolling their eyes at the idea of passive "slacktivism." But six weeks after the challenge went viral, the ALS Association reported it had received more than $115 million in donations.

According to the ALS Association, $77 million of that went to research; $23 million went to patient and community service; $10 million went to public and professional education; $3 million went to fundraising; and $2 million went to external processing fees. The rest went into investments, Quartz reported.

Of the $77 million that went toward research, $1 million went to Project MinE — which is seeking to examine the DNA of 15,000 ALS patients and 7,500 people without the disease. The money was used to extend the group's research to the United States. According to a recent press release by the ALS Association, Project MinE has currently collected 35 percent of its goal.

The group was founded in 2011 by entrepreneurs Robbert Jan Stuit and Bernard Muller, who both have ALS.

The disease, also known as Lou Gehrig's disease, is a neurological disease that attacks nerve cells that control muscle movement, according to NINDS. It affects more than 12,000 people in the U.S., making it one of the most prevalent neurological diseases.

It is a "rapidly progressive" and "invariably fatal" disease that causes weakness in muscles. Most people with the disease will die from respiratory failure three to five years after being diagnosed, NINDS reports.

Email:; Twitter: @sarapweber


Please with your account to comment on this story. You also will need a Facebook account to comment.

Oldest First
View all