It is the year 2014. You’re starting your day with a cup of coffee and your favourite social media website, and everywhere you see your favourite celebrities taking part in the ‘Ice Bucket Challenge’. The ice bucket challenge involved dumping a bucket of frigid water onto the participant’s head and then nominating others on Facebook and other social media channels to do the same. Those nominated had 24 hours to dump ice water on their heads or make a charitable donation, although many people did both. The money went to various charitable organizations who worked for ALS awareness and research. And now, there’s good news! An international collaboration of researchers announced last week they had newly identified a gene that appears to contribute to ALS — a discovery that could lead to new treatments for the devastating neurodegenerative disease.
In case you didn’t know, Amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease) is a specific disorder that involves the death of neurons that control voluntary muscles. No cure for ALS is known. Many people who develop Motor Neuron Disease, also called Amyotropic Lateral Sclerosis (ALS), and/or Frontotemporal Dementia (FTD) have abnormal repeats of nucleotides within a gene called C9orf72 which causes neurons to die. Dr Vasanta Subramanian, who led the study, said: “Our hope is that by researching accurate animal models of these diseases scientists can eventually develop new treatments and eventually cures for these devastating degenerative diseases.” (The gene was expressed in the hippocampus of a mouse brain.)
But perhaps more remarkable is this: That global research was made possible with just a $1 million grant from the more than $220 million that were raised by the mega-viral ALS ice bucket challenge in 2014. And that is what I want to emphasize on in this week’s Talk Back Thursday. The novel idea of raising awareness of a rare fatal disease by community engagement using social media. Perhaps this could be the first of many social experiments to generate community engagement for the advancement of research in all fields. What do you guys think? Let me know in the comments. Let us know what you think we should talk about in next week’s Talk Back Thursday.
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