I went back and forth about whether or not I was going to participate in the ALS Ice Bucket Challenge if someone challenged me. At first I thought “Of course I’d do it! It’s for a great cause!” and I was further encouraged when I heard just how much money the ALS association had earned thanks to the Ice Bucket Challenge and the subsequent increase in awareness about the disease. But in the past week, with the challenge being featured on all major talk shows, celebrities posting videos and my Facebook news feed flooding with #icebucketchallenge, it started to seem that the challenge was getting out of hand and possibly turning into a game, moving away from the real purpose which was to raise awareness about a very real, serious, debilitating and life threatening disease.
But then I saw the “ALS Sucks!” video filmed by a guy who knows ALS first hand. His grandmother had it, his mother was diagnosed when he was in high school and just recently, he too was diagnosed. While the video is pretty silly at first, I encourage you to fast forward to when he stares down the camera and recounts his own story, just be sure to have a box of kleenex nearby.
“People are getting frustrated about seeing ‘The Ice Bucket Challenge’ that means our awareness is working, it wouldn’t be successful if we weren’t irritating a few people. I promise your newsfeed 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…Only 30,000 people in the U.S. have ALS, not many people know about it and there’s not very much incentive for the pharmaceutical companies to invest the billions of dollars it takes to develop a drug because I’m not profitable, I’m not worth saving. Right now my hands are starting to atrophy away, they’re getting weak, I’m having trouble starting my car, buttoning my shirt. Eventually I won’t be able to use my arms or hands at all. Eventually I won’t b able to walk, talk and breathe on my own. And that’s the real truth of what ALS is. It’s devastating. It’s costly. It’s not profitable.”
I cannot even imagine what it would be like to go through life with a disease like ALS, to be diagnosed with it and know that there is no hope for you because a cure does not exist, and what’s more, there is very little hope of a cure being developed. The way he wraps up his video, encouraging all of us to participate in the challenge was enough to convince me. We are making a difference, and even if that difference is just by bringing a smile to an ALS patient for a few moments, that’s enough for me to take the challenge.
“This is the first successful advocacy we’ve ever really, really had and I’m so, so grateful. You have no idea how every single challenge makes me feel, lifts my spirits, lifts every single ALS patient spirits. You’re really, truly making a difference and we’re so, so grateful.”
And a fun little fact. After posting my video on Facebook, a friend of mine informed me that Melinda Gates had also combined her birthday celebration with the Ice Bucket Challenge. [Birthday Hats] off you you Melinda!
Want to know more about how the #IceBucketChallenge is helping the ALS Association? Check out the following infographic:
Finally, I encourage all of my readers not only to take part in the #IceBucketChallenge by donating or creating a video to raise awareness for ALS, but to also consider what ways we can use the social media and technology that we have at our fingertips each and every day to raise money for our own favorite causes and charities. Do you accept the challenge??