Thursday, September 4, 2014

Sick of the ice bucket challenge?

So you're sick of the ice bucket challenge eh?

I mean, you've already heard the stats: so few people get ALS - so why are we raising a disproportionate amount of money on this illness when there are far more "worthy" ones - at least in terms of human suffering.

Heck - clean water supply is a bigger issue isn't it?

Yet here are people wasting clean water - wasting it - on some stupid challenge to raise money for some piddling little condition that almost no one suffers.

I mean, you heard it on TV right?



And now we hear that ALSA is trying to claim intellectual property over the whole ice bucket thingy - despite having nothing to do with it initially.  What gall!

And now you hear about fraud - that's right fraud in ALSA.  Some 73% of the money isn't going towards researching this condition!

Except that these arguments have more holes than a colander through which you can pour iced water...

First, there is no fraud.  I'll let you do the research, but here is a start.  The report was from a satirical site that some people believe is an actual news one.

In any event, almost every single charity on the planet has operating costs.  Not every cent can go towards "research".

Then there's the whole business about number of deaths vs how much we should raise.  Yes it's true: very few people die of ALS every year.  But is that really an issue?  What is the issue?  The issue here is whether ALS, as a cause, deserves to have this amount of attention - this "moment in the sun".

First consider this: so little money has been raised for ALS in the past that the $31.5 million raised during the ice bucket craze is still tiny by comparison to most fundraising for AIDS, heart disease, breast cancer, etc.  And, most importantly, the current "fad" eclipses any previous attempt to raise money or even awareness of ALS by a factor of at least 1,000 or or even 10,000.

I mean, had you ever heard of ALS before?

Then there's the benefit of all this attention:

Here's the deal: I studied "Lou Gehrig's Disease" back at university in 1985.  I knew it kept your brain alive but slowly killed your motor neurons until you couldn't walk, talk, swallow or - eventually - breathe.  I knew it involved a sentence of death in 3 years from the time of onset/diagnosis (unlike other motor neuron conditions where life can be prolonged).

But I had some idea that Lou Gehrig's Disease was really one of the huge number of such diseases being studied and slowly addressed.

What have I found out in 2014?  I have found out that we've gone almost nowhere in finding a treatment - never mind a cure.  I have found that almost no one I speak to has even heard of amyotrophic lateral sclerosis - even after the ice bucket challenge.

And I have found out that ALS barely warrants attention from drug companies; it seems too few people suffer from this condition to make research worth their while.

I have also found out how mean-spirited people can be: how "irritated" they can get because some blasted craze of dumping icy water on people's heads keeps interrupting the "lolkatz" on their Facebook feed; how they can be so lacking in humour and compassion as to deny the ALS sufferers their own "symbol" or "gimmick" that promotes their particular issue (which is like getting annoyed at the Cancer Foundation's yellow daffodil, or breast cancer's pink ribbon, etc.); how they can begrudge those trying to raise money and awareness of this terrible (albeit relatively rare disease) their "moment in the sun" in terms of public awareness.

Well, finally, amyotrophic lateral sclerosis has the public's attention.  Yes this attention will be brief.  Don't worry - your lolkatz will return to their usual programming soon.  In the meantime I hope ALS sufferers get all the attention they can get.  I hope their principal association - ALSA - gets to put its stamp on the ice bucket challenge as its own "gimmick" - so that it can repeat the show every now and again when people forget.  God knows, ALS needs such a gimmick.  And ALSA is probably best placed to protect that gimmick from copycats.

So while I know of no one who suffers from ALS, nor have I even thought of it in 30 something years, I'm happy to take part in it and raise a bit of money.  That I could use the occasion to do some martial arts (sanchin kata) was a bonus.  That I could do so while answering a critic?  Even more so.



Late in in on the craze?  This is a case of better late than never.

At least I got to show Tom Cruise how to stop being a wussy (he needs some sanchin lessons, I think - check out his histrionic reaction to a bit of cold water).



And, for the benefit of that fairly heartless reporter from Queensland, Lincoln Humphries: waste of water and ice?  Really?  Give me a break.  I bet you don't bat an eyelid as you flush your faeces down the toilet every day using fresh, clean drinking water.  And lots of it.  Shame on you.

This water (about 4 L plus a small bag of ice) was worth it, if nothing else than because it raises awareness of a condition that is barely known.

And as for the ice being "better used for cooling beers"... talk about a first world problem!

Sometimes the cost of something is worth the price - even if that price includes annoying a few irritable, mean-spirited people.

Lincoln: deal with it.

Copyright © 2014 Dejan Djurdjevic