Remember the Ice Bucket Challenge that went viral two years ago 2014? Not Sure? Let me help. The challenge was about throwing a bucket of ice water over your head with the intention of raising awareness and funding for amyotrophic lateral sclerosis (ALS) disease.
ALS is a neurological disorder that is rapidly progressive and fatal in all cases. According to National Institute of Health (NIH), the disease permanently reduces the activity of voluntary muscles and is currently incurable.
In 2014, as many as 17 million people uploaded their videos of Ice Bucket Challenge which also included many notable celebrities. Those videos managed to spread awareness among people and eventually raised more than $115 million for ALS research! To think what an internet sensation can do, right?
Here, check out videos of some celebrities:
Many people criticized the Ice Bucket Challenge calling it “slacktivism” (lazy activism). As it turns out, the funding that enabled six research projects on ALS might eventually find a cure and prove these critics wrong. Project MinE under the ALS Association recently completed the largest research on genetic coding of motor neurone disease (MND) which is also known as inherited ALS. More than 80 researchers tried to identify the risk genes for the neurological disease.
The study led to the discovery of NEK1, a new gene that is thought to be essential for the presence of ALS. The results were published this week in the journal of Nature Genetics.
Among all ALS cases, only 10% are inherited but researchers are hopeful that NEK1 is present in many forms of the disease. This means that scientist can now busy themselves in developing a gene therapy strategy to treat ALS and all of it began from the popular Ice Bucket Challenge.
“It’s very exciting because it shows everyone who contributed to the Ice Bucket Challenge that their donation had an impact on the research,” said Brian Frederick, executive VP for communications and development at ALS Association. “The work that Project MinE is doing is really important, and the discovery of this new gene will help us better understand ALS.”
So all those buckets of ice water, all those videos and celebrity challenges and donations were not merely a “stunt” as critics called it. It actually made a difference and hopefully one day ALS will no longer be an incurable disease. Have you done the Ice Bucket Challenge? How was your experience? Let us know if you contributed to ALS research in any way.