Tag: Lou Gehrig’s disease

For better or worse, the viral stunt known as the Ice Bucket Challenge is cluttering your newsfeed. And it’s not just your friends and family dumping freezing cold water on their heads all in the name of the crippling neurological condition ALS (or as it’s more widely known, Lou Gehrig’s disease). Celebs (Martha Stewart, Justin Timberlake), athletes like Michelle Wie and Andrew Luck, politicians and other public figures have all taken part. Even Ethel Kennedy recently challenged President Obama to do it.
For those who aren’t up to date, the challenge requires participants to record themselves dumping a bucket of ice water over their heads and then nominate others to do the same. Those who refuse to take part have to donate money to an ALS charity or another cause of their choice.
MORE: How a Terminally Ill Man’s Plot to Steal Donuts Led to a Remarkable Day of Giving
Whatever you might think about social-media driven activism (which is often referred to as slacktivism), this campaign has been a huge success for a disease that gets comparatively less charitable giving than others. ALS Association spokeswoman Carrie Munk said the organization has collected an incredible $1.35 million from July 29 to Aug. 11.  The same time last year, donations were only $22,000.
“It’s just been wonderful visibility for the ALS community,” ALS Association’s national president, Barbara Newhouse told WBZ NewsRadio. “It is absolutely awesome. It’s crazy, but it’s awesome, and it’s working.”
Yes, funding and awareness is important for any deadly ailment, but critics of the ice bucket campaign say that it’s similar to a host of other causes that have become popular through clever marketing (#nomakeupselfie, Kony 2012, to name a few). Sumpto founder Ben Kosinski wrote in a Huffington Post blog post, “The whole thinking is that instead of actually donating money, you’re attributing your time and a social post in place of that donation. Basically, instead of donating $10 to Charity XYZ, slacktivism would have you create a Facebook Post about how much you care about Charity XYZ — generating immediate and heightened awareness but lacking any actual donations and long term impact.”
Not to mention that it’s a problem when the premise of the challenge is to pour cold water all over yourself or else donate money for charity. Philanthropy shouldn’t be a punishment.
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So don’t pour water over your head just for a few likes and favorites or because it seems like everyone else is doing it. As Jezebel points out, “Martha Stewart didn’t even mention charity — making it seem like a random dare from Matt Lauer.”
If you decide to go for the challenge, do it because you’re acknowledging that a few moments of cold discomfort isn’t nearly as difficult as what people with ALS have to go through every day. The disease, which affects more than 12,000 people in the U.S., still doesn’t have a cure, nor do we even know what causes it.
As the Associated Press reports, former Boston baseball player Pete Frates, who started the ice challenge craze a few months ago, is paralyzed and eats through a feeding tube and cannot talk because of the disease. (He was diagnosed with ALS back in 2012 at the youthful age of 27.)
Additionally, be sure to also volunteer, donate, and educate yourself about ALS and encourage others to do the same.
DON’T MISS: Meet the Teen Who Helped Scientists With a Breakthrough in Her Rare Disease
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