What will
bathing, well not bathing, just dumping a bucket of water, which has some ice
in it, achieve? Oh wait, you also put the act up online for tens to millions to
view, depending on people you could pitch it to. Well important thing, the
bathing, given the public display, is with clothes on. Ice bucket challenge for
ALS has become viral over the past few weeks and each day more and more videos
for the same are posted online.
For the starters
it is Amyotropic Lateral Sclerosis. ALS. It is also called as Lou Gehrig
disease named after an American baseball player. Stephen Hawking, the famous
scientist was diagnosed with it and the recent. ALS is a neurodegenerative
disease, which begins with weakness in legs, spreads with muscles not working,
which affects speaking, swallowing and could affect breathing. Yes, a difficult
disease.
And how
frequently does it occur? 1 or 2 in 1,00,000. That is rare. And what is the
treatment? Practically very limited, with one drug known to improve survival
and others to manage the host of associated conditions.
Ok we were at
the Ice Bucket Challenge remember? It is to raise awareness, raise money for
research for ALS, which is all good and warranted. But what is not warranted is
the mindless oh-am-so-cool, oh-am-so-concerned, oh-am-so-updated horde of
joining the challenge and nominating others thereby triggering the chain.
The criticism
are plenty. Beginning from wasting water which is of great value to a host of
people to no link between donating money and taking a bath. What it could do is
make a few people google what ALS is, which in itself is good that it added to
their GK.
To put things in
perspective, about 6,27,000 people dies of malaria in 2012. Yes the what-you-think
not-so-serious malaria. Donation for that could help millions. This is
certainly not to discredit the requirement of awareness and funding for ALS
research and patient-support. It has been a sad fact, but an economically and
socially prudent one perhaps that disease affecting the larger number of people
receives more attention.
But the Ice Bucket
challenge is nothing to do with the above serious issues of healthcare policies
and flux of research. It is more about a rat race in a dignified manner. It is
to look cool since Lady Gaga, Satya Nadella, Justin Beiber have taken it. It is
to identify with the global awareness drive and show to your friends over
facebook and twitter how charity is a concern for you (which as well could
genuinely be). It gives you a sense of satisfaction of having done something,
and there is nothing wrong with that. It is just the lame act.
A word of
caution: take care not to catch a cold.
Talking of severe disabilities Duchenne's Muscular Dystrophy is the severest And they are forgotten children of Medical Science. I wish the huge money generated is shared with this.
ReplyDeleteA recent report of accounting showed the ALS foundation only uses about 7-8 % of its proceedings towards research, the rest is marketing and business fees...
ReplyDeleteIndeed, ALS foundaion has a bad track record.
ReplyDeleteThere are many disorders that kill more ppl than ALS.
Sambit Sir ..I agree with you completely but i feel the "Ice Bucket Challenge" was extremely well marketed. I am more intrigued by their marketing skills and the strategies that were basic but created such an impact. They have targeted human psyche and captured the imagination of the people. However, the act was lame in the context of charity. Probably, organizations for rare disorders like ALS are not funded well enough because of lack of awareness or whatever, that they had to resort to such publicity.
ReplyDelete