The internet is absolutely abuzz with videos of famous faces and normies all dumping buckets of ice water upon their heads as a call for awareness about the neurodegenerative disorder ALS. And just as like all things popular, the haters are coming out of the woodwork. But here's why the Ice Bucket Challenge matters.
For those unaware, the premise is simple: Someone challenges another person to either dump a bucket of ice water over their head or give $100 to the ALS Association. After the bucketing, the soaked person can then challenge other people. But the water hasn't stopped people from giving; in fact, it's helped bring in more money. The ALS Ice Bucket Challenge has raised millions upon millions of dollars for the ALS Association (over $23 million has been raised thus far and it keeps growing)—and raise awareness about the disorder.
Enter the haters.
Bill Dwyer at the LA Times scolds participants for not tackling the serious subject in a serious manner. "Still," he writes in his op-ed, "I wish more had said, when challenged, that pouring water on heads, with its accompanying attention-grabbing and frivolity, didn't quite mesh with the cause. ALS isn't the least bit funny."
A Slate piece called into question the actual monetary rewards the ALS is seeing from the Ice Bucket challenge, saying, "a lot of the participants are probably spending more money on bagged ice than on ALS research." And it accuses most of the videos failing to raise awareness to the actual disease. It's worth noting that both the LA Times and Slate pieces do encourage people to donate to the ALSA, but quietly and without involving buckets of water.
To the nay sayers and ice haters comes a response from Anthony Carbajal, a 26-year-old man who was diagnosed with ALS this January. Carbajal is currently caring for his mother, who is also living with the same disease, and is beginning to experience the first symptoms of his own ALS. To all those that say this challenge is pointless when it comes to raising awareness, Carbajal counters with this very real, emotion-filled video (posted above). It's clear that it's important (and emotionally moving) for him to see his illness status valued publicly:
"People are getting frustrated about seeing the ALS Ice Bucket challenge, and that's find, that's fine, that means our awareness is working. It wouldn't be successful if we weren't irritating a few people, right? I promise your news feed will go back to cat videos and 'Let it Go' covers. But right now the ALS community has the main spotlight and for once in my entire life I've seen it in the forefront."
"This is the first successful advocacy that we've ever really, really, really had and I am so, so, so grateful. You have no idea how every single challenge makes me feel. Lifts my spirits, lifts every single ALS patient's spirits. You're really truly making a difference. We're so, so, so grateful."
If you're wondering what Carbajal meant by his "they don't care about" line, ALS is sometimes called an "orphan disease." Meaning it afflicts only about 2 in 100,000 people (via Forbes). So there's little monetary incentive for pharmaceutical companies to find a cure. This is where awareness and donations can help.
The video speaks for itself. The money does too. Clearly the Ice Bucket Challenge is working.
So before you get all huffy about another Ice Bucket video on YouTube, listen to Barbara Newhouse, President and CEO of the ALS Association, "While the monetary donations are absolutely incredible. The visibility that this disease is getting as a result of the challenge is truly invaluable. People who have never before heard of ALS are now engaged in the fight to find treatments and a cure for ALS."
The fact that we are talking about it matters.
[via Laughing Squid]