While 2016 has been reduced to a year everyone wants to ‘forget’ it is also one in which a serious discovery was made that will change the lives of those who were told they would lose all ability to move. The ice bucket challenge splashed across all forms of social media in 2014. People of all ages and nationalities rushed to their computers and challenged their friends to stand under freezing water. While the videos provided entertainment, they also stood for a cause that would not be washed away, one that was worth the internet sensation. The penalty for the lack of participation, once nominated, was to donate to the ALS Association.
The ALS association works to raise awareness and funds for research to find possible treatments for the disease. ALS is a progressive disease that targets nerve cells in the brain and spinal cord. The degeneration of the motor neurons leads to their demise. When these neurons die the ability of the brain to have control over muscle movement is lost. People who suffer from this disease eventually lose the ability to speak, eat, move and breathe.
the campaign for awareness came under serious scrutiny as many dismissed it as a misrepresentation of a very serious disease. The ice bucket challenge seemed like a fun activity that became more about seeing friends run from cold water than about having discussions about a disease that needed funds. Despite the criticism, the association managed to raise 150 million dollars, proving that the contributions made during the internet sensation were not only helpful but a huge ‘game changer’ according to Nancy Frates ‘ice bucket mum’.
Researches using only a fraction of the amount raised were able to discover the gene responsible for ALS: NEK1. This gene was found due to a genome-wide search for ALS risk genes in over 1000 ALS families. The research was conducted by project MinE a group started by Bernard Mullar who has ALS and was keen on investigating the root of the condition.
“Global collaboration among scientists, which was really made possible by ALS Ice Bucket Challenge donations, led to this important discovery,” said Dr. Landers. “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.”
The ALS association’s logo is ‘every drop counts’ in an instant the story of a man struggling with ALS sparked an unstoppable wave of support. People donated in hopes that maybe their small contribution would make a difference. The year 2016 marked the difference that began with every individual ‘drop’.