Source: Independent UK
Cynics may have dismissed the ALS Ice Bucket Challenge campaign as a stunt, but it has helped fund research that has led to an important breakthrough.
The Challenge, which invited people to pour a bucket of iced water over their heads in order to help solicit donations, raised more than $100M in a month and was able to support multiple research projects.
A study given $1M raised by the ALS Association’s campaign has led to the discovery of a gene that appears to be behind some cases of amyotrophic lateral sclerosis (ALS), a neurodegenerative disease that affects nerve cells in the brain and spinal cord.
The Massachusetts University Medical School’s Project MinE has now identified the role of a gene called NEK1. While it associated with only three per cent of all ALS cases, it is present in both the familial and sporadic forms of the disease. NEK1’s variants could help researchers understand and develop new possible treatments for ALS sufferers.
The study was the largest-ever examination of familial ALS, involving contributions from 80 researchers in 11 countries. Dr. John Landers, the leader of Project MinE, said in a statement: “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.”
“The ALS Ice Bucket Challenge enabled us to secure funding from new sources in new parts of the world,” adds Bernard Muller, founder of Project MinE and an ALS patient. “This transatlantic collaboration supports our global gene hunt to identify the genetic drivers of ALS.”
Celebrities ranging from musical acts like New Jersey’s Bon Jovi to Facebook founder Mark Zuckerberg to pro athletes like Eli Manning to actors like Benedict Cumberbatch took part in the challenge, as did not-so-famous individuals, police/fire departments, and community groups around the globe.
All ALS patients are encouraged to enroll in the ALS.org national registry.