The "Ice Bucket Challenge" And Why I Am Not Participating

*DISCLAIMER-Please read in entirety before forming a judgment or commenting*

Unless you have been taking a social media break or living under a rock, you have either heard about or participated in the “Ice Bucket Challenge” for ALS, also known as “Lou Gehrig Disease”. These are the videos people are posting where they dump water on their head to spread awareness for ALS and then they call out the names of other people to do the same. If they don’t want to dump the water, they can donate a larger amount of money. So basically, donate a small amount and get ice water dumped on you or stay dry and donate $100 to ALS.


So far it seems like this trend has been pretty successful with no signs of stopping anytime soon. According to Forbes magazine and other internet sources, between July 29 and Aug. 12, the ALS Association and its 38 chapters raised a total of $4 million, or nearly $3 million more than during the same period last year. The campaign has already, Facebook told Time magazine this week, resulted in 1.2 million unique videos.

As a 12-year, stage-3 colon cancer survivor and active in the fight against cancer, I am all in favor of doing whatever it takes to raise awareness and funds to fight cancer. I was even in a project of young colon cancer survivors, called a Colondar. Colon Club Colondar

I have also spoken at many American Cancer Society “Relay For Life” events. I have never passed up an opportunity to discuss cancer and the effects of it. I also run marathons and am doing an Ironman for cancer awareness. Lou Gehrig was one of my heroes. I even written about Lou Gehrig in a previous blog, Today I Consider Myself The Luckiest Man On The Face Of The Earth

For the record, ALS, or Amyotrophic lateral sclerosis, is a disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement. Its cause is unknown and although there is currently no cure for ALS, there are medications that can significantly slow its progress.

So knowing all of this, why do I not want to participate in the “Ice Bucket Challenge”? That’s a very good question. Why does it bother me sometimes when I see these videos? That’s another good question. I have given both of these questions some thought and here is what I have come up with.

I watch these videos and I don’t know anything more about ALS then I did before the people in them got wet and cold. How about telling me where I can donate or spend time? How about including a link with the video? Give me some information on this disease. That’s how we spread awareness!

Some people have focused on dumping the ice water rather than put the focus on spreading awareness. It has become a novelty stunt for laughs.
“Watch me dump ice water over my head and scream!”
I also wonder how many of the people that I am seeing are actually donating anything to an ALS organization. How many people in the videos even know the name of an ALS organization?

Clearly some people are donating money because ALS organizations are bringing in way more money now than in years past. That is an AWESOME thing! I am not trying to minimize that at all. I just don’t like the fact that this awareness campaign has become more about dumping ice water than the disease.

Kara Brown wrote a piece about this topic.

I tend to be skeptical of organizations or campaigns where the main focus is to "raise awareness." In this case, I'm not sure how raising awareness is actively helping people who suffer from ALS. Does pouring a bucket of ice water over your head get us any closer to finding a cure? Unless this translates into some sort of donation or perhaps volunteering your time, it's hard to see how this aids in enacting any changes. What it does do is help those participating feel very good about themselves and all the good goodness they're doing. Now, ALS is a terrible disease and no one is suggesting that raising awareness is entirely unnecessary but regardless, is this really the best way to go about it? There is absolutely no real information being put forth by the Ice Bucket Challenge. I walk away from these videos not really knowing anything more about ALS other than that it exists.

My point is simple. I actually LOVE the idea of this crazy ice water dump thing but MAKE IT COUNT! Make a donation. Spend some time there. Otherwise, your video of you getting cold and wet is just that, a video of you getting cold and wet.

Don't just do something because everyone is doing it. Do something right because it's the right thing to do.

Here is a link to find out where you can donate or serve to help out with ALS. LINKS

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