Took The Ice Bucket Challenge? You Just Funded A Huge Discovery!


Your memory of dousing yourself with ice cold water may have faded but the results are lasting! The funding from the ALS Ice Bucket Challenge in 2014 has led to the identification of a new ALS gene called NEK1. NEK1 is one of the most common genes that contribute to ALS and will provide scientists with a potential target for developing gene therapies to treat the condition. Initially, there was widespread scepticism concerning the Ice Bucket Challenge social media campaign but the challenge raised 115 million USD that went towards Project MinE. Project MinE is a global gene sequencing effort and it is also the largest-ever study of inherited ALS which included 80 researchers from 11 different countries.

The Ice Bucket Challenge – The Road So Far

The ALS Ice Bucket Challenge enabled us to secure funding from new sources in new parts of the world – Bernard Muller, initiator of Project MinE.

The Ice Bucket Challenge was designed to promote ALS awareness and raise research funds. When a person was nominated, he/she had to pour a bucket of ice water over their own head and then post a video of it on social media. The person would then donate to the ALS Association and nominate 3 more people to follow suit. It went viral in July 2013 with celebrities, athletes, and politicians posting their videos online. Some cynics claimed that this “stunt” did little to spread awareness regarding ALS but hits to Wikipedia’s ALS page went from an average of 163,300 views per month to 2.89 million views in August 2014.

ALS – The Path Ahead

The discovery of the NEK1 gene has added another step towards our ultimate goal, eradicating this disease from the face of the earth.

ALS stands for Amyotrophic Lateral Sclerosis although it is often referred to as “Lou Gehrig’s disease” (after the baseball player Lou Gehrig who was diagnosed with this condition in the late 30s).  It is also known as MND or Motor Neurone Disease since it is a progressive neurodegenerative disease. The disease destroys the nerve cells in the brain and spinal cord which are responsible for controlling the muscles in the body. When the nerve cells are destroyed, muscle movement is impaired and in time, this results in paralysis and eventual death.

Bernard Muller, one of the 3 initiators of Project MinE acknowledged this breakthrough but also reminded people that there is still a long way to go. According to Muller, “the discovery of the NEK1 gene has added another step towards our ultimate goal, eradicating this disease from the face of the earth”.

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