Ice Bucket Challenge raises $115m; funds gene discovery in ALS (MND) research

The Ice Bucket Challenge, which was widely criticized as a stunt, has infact funded six research projects. One of the key projects is a scientific gene discovery in the progressive neurodegenerative disease ALS, the ALS Association says. Scientists have identified a new gene contributing to the disease, NEK1. 

The Ice Bucket Challenge went viral in 2014 which has raised $115m (£87.7m) from people pouring cold water over themselves. Research by Project MinE, published in Nature Genetics, is the largest-ever study of inherited ALS, also known as motor neurone disease (MND). 

Lucie Bruijn of the ALS Association says, “The sophisticated gene analysis that led to this finding was only possible because of the large number of ALS samples available.” Besides, more than 80 researchers in 11 countries searched for ALS risk genes in families affected by the disease.

With the identification of gene NEK1 scientists can now develop a gene therapy to treat it. Though only 10% of ALS patients have the inherited form, researchers believe that genetics contribute to a much larger percentage of cases.

In the year 2014, social media was abuzz with vast number of videos of people pouring cold water over their heads to raise money for ALS.  More than 17 million people uploaded videos to Facebook, including many celebrities who rose to the challenge, which were then viewed by 440 million people across the world.

Let’s understand what is amyotrophic lateral sclerosis (ALS), also known as motor neurone disease (MND): 1) It is a fatal, rapidly progressive disease that affects the brain and spinal cord; 2) It attacks nerves that control movement so muscles refuse to work (sensory nerves are not usually affected); 3) It can leave people locked in a failing body, unable to move, talk and eventually, breathe; 4) It affects people from all communities; 5) Scientist Stephen Hawking is best-known person with the disease; 6) It kills around a third of people within a year of diagnosis and more than half within two years; 7) There is no cure.