Ice Bucket Challenge donations help scientists discover new gene linked to ALS

Money raised from the Ice Bucket Challenge, the social media phenomenon which swept the world in 2014, has resulted in scientists discovering a new gene linked to Amyotrophic Lateral Sclerosis, also known ALS or Lou Gehrig's Disease.

The challenge in which people dumped buckets of ice water over their heads for charity before nominating more people to take up was impossible to ignore two years ago, with everyone from celebrities such as Justin Bieber, Oprah Winfrey and Barack Obama to pretty much all your friends on Facebook taking part.

The Ice Bucket Challenge was backed by the ALS Association, who praised the fundraising scheme for raising more than $100m (£76m) for the incurable disease in which cells of the nervous cell system die, resulting in muscle weakness, impacting speech, movement, swallowing and breathing.

However, the Ice Bucket Challenge also had its critics, from those who believed many were taking part in it merely to be seen participating in the latest trend or a prime example of "slacktivism" – online activism that requires minimal time, effort or meaningful involvement.

However, these critics may look to be silenced following the announcement from the University of Massachusetts Medical School's Project MinE, who said money raised from the Ice Bucket Challenge has helped them discovery a new gene which could put scientists on the track to new therapies for the disease.

According to a paper published today in Nature Genetics, researchers have discovered a new ALS gene, NEK1, which now ranks among the most common genes that contribute to the disease and is present in both inherited and sporadic forms of the disease.

According to the ALS Association, NEK1 has multiple roles in neurons, including maintenance of the cytoskeleton as well as regulating the membrane of the mitochondrion, which supplies energy to neurons and in repairing DNA. Disruption of each of these cellular functions through other means has been linked to increased risk of ALS. The gene was found through a genome-wide search for ALS risk genes in over 1,000 ALS families following the largest ever study of inherited ALS, involving contributions from over 80 researchers in 11 countries.

Dr. John Landers, who headed up the team of reseachers, said: "Global collaboration among scientists, which was really made possible by ALS Ice Bucket Challenge donations, led to this important discovery.

"It is a prime example of the success that can come from the combined efforts of so many people, all dedicated to finding the causes of ALS. This kind of collaborative study is, more and more, where the field is headed."

Project MinE founder and ALS sufferer Bernard Muller said: "The ALS Ice Bucket Challenge enabled us to secure funding from new sources in new parts of the world. 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."