Thursday, August 28, 2014

Steven's ALS Ice Bucket Challenge

You've seen it all over Facebook and YouTube.  Celebrities and civilians alike posting videos of the ALS Ice Bucket Challenge.  When I saw people I know start to do it I just knew it would get me too.

Yes, Mom.  I accept your challenge.

But Why All This Fuss Over ALS?

First I did a little research.  After all, this Ice Bucket Challenge raises awareness for Amyotrophic Lateral Sclerosis (Lou Gehrig's Disease).  That, and money, but we'll get to that in a moment.  This is a terrible degenerate disease that kills the nerve cells in the brain and spinal cord leaving you partially or fully paralyzed.  It's estimated that as many as 30,000 Americans have ALS and life expectancy averages 2-5 years after diagnosis (

Living with ALS just sounds terrible and makes you want to help, doesn't it?  And then the Ice Bucket Challenge sweeps through social media and gives us all the opportunity to learn about ALS and be part of the discussion while enjoying the reactions of people doused with ice water.

Where Does All the Donation Money Go?

Beyond just awareness, this Ice Bucket Challenge has proved to be a big fundraiser for the ALS Association with over $94 million raised as of yesterday.  The ALSA seems to be a responsible charity, using the money as promised.  Charity Navigator gives it a financial score of 90.73 out of 100 with over 72% of the money going directly to its programs.  All charities and non-profits have additional expenses so that looks about normal.  ALSA's own website shows this pie chart for how the money is used:

With such a windfall of cash raised by the Ice Bucket Challenge some questions pop up.  What will happen next year when donations drop back to normal levels?  Will all this money be treated the same as what's in that pie chart?  Though we don't have a definite answer yet a recent press release states:
“Under the leadership of our Board of Trustees, we are putting a decision-making process in place to address how this money will be spent. This is isn’t a matter of spending these dollars quickly—it’s a matter of investing these dollars prudently to achieve maximum impact in our quest to help people living with the disease and those yet to be diagnosed...
“We appreciate the numerous emails and phone calls from people who have very clear ideas as to how this money should be spent. While we don’t yet have a percentage breakdown of how the money will be allocated, I want to assure donors and public that ALS research and care services to people living with ALS are top priorities for The Association,” 

I was already going to accept the challenge but that's merely due to the peer pressure and sense of community involved.  Hey, are you going to say no when your mom calls you out?  Learning about ALS and what those affected deal with every day made me more determined to dump ice water on my head.  Then, fad or no, looking up the finances makes me feel all the better about this whole Ice Bucket Challenge.  What really solidified it for me, though was this article on

What Does Someone with ALS Think of the Ice Bucket Challenge?

This article on is a good read.  It starts with the critics: Is the Ice Bucket Challenge going to cure ALS.  No; charities shouldn't have to set the bar so high in order to do good.  What about wasting so much water?  It's a mere drop in the bucket compared to the 80 to 100 gallons the average American wastes every day.

This writer's husband has ALS and welcomes all the attention as long as some good comes out of it. "We are in for the fight of our lives with this monster, and the very LAST thing I want is for people to give quietly, anonymously, and then slink away."

She ends with 10 suggestions - Empathetic Experiences - to understand what someone with ALS suffers.  Try lifting a 10-pound weight, pretending it's your fork, and mimic eating a meal.  Without using any of your own muscles have someone dress you and brush your teeth.  Go to bed and lay in one position without moving anything for as long as you can.  Give the whole article a look:

Sure, no effort is perfect and there are many charities with deserving causes but I've looked into this whole Ice Bucket Challenge and I applaud this effort.

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