The ice bucket challenge for ALS was a phenomenon back in the summer of 2014. People were seen on facebook dunking a bucket of iced water over their heads while soliciting donations and nominating others to do the same.
The campaign took off and raised more than $100m in a 30-day period. That money funded a number of ALS research projects.
One of these was Project MinE, a large data-driven initiative funded by the ALS Association through ice bucket challenge donations, as well as donations from the organization’s Georgia and New York chapters. The project’s researchers announced on Monday that they have identified a new gene associated with the disease, which experts say could lead to new treatment possibilities.
Amyotrophic Lateral Sclerosis, also known ALS or Lou Gehrig’s Disease, is a neurological disorder in which the motor neurons that control muscle function slowly die. The disease can be either sporadic or inherited, and in either case there is currently no cure.
“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 vice-president of communications and development at the 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.”
The newly discovered gene, NEK1, is only associated with 3% of ALS cases, but it is present in both inherited and sporadic forms of the disease, which researchers say gives them a new target for the development of possible treatments.
Project MinE has been working to sequence the genomes of 15,000 people with the disease, and the discovery, which was described in a paper published on Monday in the journal Nature Genetics, involved more than 80 researchers in 11 countries.
The discovery was significant, Frederick said, “because it helps us understand what’s triggering this and can help us better find a treatment,” though he added that “it’s still very early in our understanding of this particular gene, and we still have a ways to go with understanding ALS generally.”