Wednesday, August 20, 2014

Thoughts on the ALS Ice Bucket Challenge

By now, I'm sure you've heard about the ALS Ice Bucket Challenge to raise money and awareness of ALS (amytrophic lateral sclerosis, also known as Lou Gherig's Disease) that quickly went viral.  People all around the world have been accepting the challenge to dump a bucketful of ice water on their heads, or else be forced to donate money to ALS research.

Many people--myself included--have done both, saturating themselves with ice water and making donations large and small to the ALS Association.

There has been some backlash, however.  Now that celebrities have joined in the fun--including Oprah Winfrey, Bill Gates, Ben Affleck, and more--there are those who say it is nothing more than a desperate attempt at garnering attention and adoration for those participating. Some complain that not enough money is being raised, or that the barrage of videos being posted on social media is getting tiresome, and is more about self-promotion than the cause of fighting ALS. They implore people to stop perpetuating the challenge because they're "over it" and just want it go away.

To them I say: it doesn't matter what is motivating people to participate in this challenge, the fact that they are doing it--and drawing attention to ALS in the process--is all that matters.   The ends justify the means in this case, so if Lady Gaga choses to sit on a chair scantily clad and wordlessly dump a bucket of ice on her head--without bothering to even mention ALS or how to donate--it still draws attention to the overall cause of raising money for ALS research, and I am grateful she took the time to do it. Could some of these celebrities have donated more? I'm sure they could have. But donations are something that must be freely given, whether it's $5 or $5,000. This is the first time ALS has been in the national spotlight to this degree, and I don't care what it took to get there--I'm just happy it's happening.

(For those who want to see some of these celeb videos, TIME magazine has a roundup of 27 of the best celebrity ice bucket challenge videos: CLICK HERE to view them)

The effort to raise awareness of ALS, and the desperate need for funding to research a cure, is something that is near and dear to my heart.  My father-in-law Nick succumbed to ALS in 1988.  He suffered an agonizing 7 years with this horrible disease.  At the end, he had difficulty breathing, could barely speak, and was completely paralyzed from the neck down. He was immobile physically, but with his mind and thought processes completely intact, fully aware of everything going on around him. I can't even fathom the feelings of helplessness and despair he must have felt at the end.

I have witnessed first-hand how ALS affects not only the person diagnosed with it, but also their family and friends.  No one should have to go through the pain that my husband and his family endured, watching helplessly as Nick slowly deteriorated and was taken from them, diagnosed at 49, and dead by the age of 56.

Fortunately--there IS hope.  Researchers are SO close to finding a cure for ALS.  So, if you are able to, I hope you'll click this link to the ALS Association's donate page and give a donation to this very worthy cause.

To everyone who has participated in the ice bucket challenge and/or donated, THANK YOU for supporting ALS research.

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