By Saloni Mhapsekar
Amyotrophic lateral sclerosis (ALS) is a specific disorder that involves the death of neurons. It causes muscle weakness. Until now there has been no medication found to cure this disorder. Many people were not aware of this disorder until it was introduced in July-August 2014 through rather crazy challenge called the “ICE BUCKET CHALLENGE” which claimed to make people aware about this sickness.
I am sure all of us are quite aware of this challenge which hit a million likes on social media. On an average every day, 15 people are freshly diagnosed with ALS i.e more than 5,600 people per year.
The ice bucket challenge was a huge success which quickly went from a fundraising campaign to a viral internet sensation that spread all the way up to President Obama. Celebrities from Oprah to Justin Timberlake to LeBron James participated in the challenge to help raise money and awareness for the crippling and ultimately fatal condition – also called Lou Gehrig’s disease.
More than 17 million people uploaded their videos on Facebook; but, this barnstorming success came to the undercurrent of critical skepticism.
This campaign was enough to raise many questions like “Was throwing the bucket of ice water on one’s body really creating awareness among people?”
“Was this stunt overshadowing the disease?”
With the ALS awareness month coming up let us unfold the answers to some of these questions.
How did all this begin?
Chris Kennedy, a golfer in Sarasota nominated by a friend to participate in the ice bucket challenge which at that time had nothing to do with ALS .Kennedy was nominated for this because a very close relative of Kennedy was suffering from this disease. And this is how the campaign began. This campaign did not have any specific charities tied to itself. However, the participant could choose the charity to which they’d want to contribute.
Lots of money was raised but, what about awareness?
The campaign raised 115 million dollars. There were two types of donors in this campaign, one who were deeply engaged in the cause and the others who didn’t even know what was ALS all about and just participated in the challenge for publicity purpose. Instead of focusing on the cause behind the challenge they were more interested in throwing a bucket full of ice cubes on themselves and having fun. This challenge encouraged people to invite more people to participate for this cause.
I’m not denying the fact that “Ice bucket challenge” brought awareness about ALS. The ice bucket created awareness for ALS disease but along with it, the water which was wasted on a large scale by 17 billion people cannot be restored.
Few supported, few criticised, few enjoyed but at the end we can conclude the ice bucket challenge which to some extent helped to raise fund but also resulted in water wastage. President and CEO of The ALS Association, said in a statement, “Progress is being made when it comes to finding treatments and a cure for this disease, and we’re so grateful for the support this August and every August until there’s a cure.” I partially agree with ALS association’s statement because wasting liters of water every year for a senseless challenge is not at all acceptable. So this June, let’s support the cause and not the immature challenge behind it.
#SupportALSandNotTheAhallenge
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With my amyotrophic lateral sclerosis (ALS), the first thing that happened almost 2 years ago now, was speaking as if I were drunk. I wasn’t. I initially did improve speech (articulating clearly but slow) but now I can no longer speak in an acceptable way. Then, a year later eating became problematic, I was biting my tongue and lips, and chewing became weak and less controlled. Soon after that some fingers started to fail me and things would drop out of my hands. Somewhere at that time bulbar ALS was diagnosed. The Rilutek (riluzole) did very little to help me. The medical team did even less. My decline was rapid and devastating.. We tried every shot available but nothing was working. There has been little if any progress in finding a reliable treatment, Our care provider introduced us to Kycuyu Health Clinic ALS/MND herbal treatment. The treatment is a miracle.i recovered significantly! Visit www. kycuyuhealthclinic. com
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