Has the Ice Bucket Challenge Become Just a Game?

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ALS VID

The ice bucket challenge was originally created to bring awareness and raise funding to support the battle against Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig’s Disease.

This is a fantastic movement started by a Boston College Baseball captain, Pete Frates, who was diagnosed with ALS in 2012. Someone calls you out to complete the challenge, and if you don’t, you have to make a $100 donation to the ALS organization of your choice.

The challenge includes taking a bucket of ice water, dumping it on your head, and calling out three new people to complete the same challenge within 24 hours––all in an effort to raise funding and awareness for ALS. This challenge has blown up on social media and resulted in raising over a million dollars this past weekend alone.

But Tyler Brown & Steve Rosenfield still aren’t satisfied. They say that the icebucket challenge has become a game more than a tool to raise funds and awareness for ALS. They want to “flip the script” on the #icebucketchallenge. In the below video, Tyler says, “Instead of dumping ice on your head to avoid a donation, you’re actually going to make a donation to avoid getting ice dumped on your head.” Take a look.

What is ALS?

Amyotrophic lateral sclerosis (ALS), often referred to as “Lou Gehrig’s Disease,” is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.

I had no idea what ALS was until I started researching because of this ice bucket challenge.

From talking to Tyler & Steve, they say this challenge is a great start to raising awareness about ALS, but there needs to be some serious follow through on the donation end.

Tyler Brown’s frustration with people losing sight of the challenge’s cause stems from personal experience. Currently working with a non-profit, he knows the difficulty of getting awareness and donations for a cause.

“How many people actually mention ALS in their videos? Half? It’s awesome to see the success of the challenge so far and I’m stoked to see people just getting up for something, but if we put the donation before the game then they’ll get awareness, potentially more money, and the same amount of fun. Non-profits live and die by donations and at the end of the day is the most important part of it all.”

To prove his point, they sent me this video of professional golfer and model, Blair O’Neal, as an example:

 

At the time of this posting, there is no mention of ALS in her video title , description, or even on Blair’s website.

 

Blair O'Neal - No mention of ALS - Youtube description

 

Rather, her website calls out the waterfall of celebrity participants she started––Greg Norman, Matt Lauer and Martha Stewart.

 

Blair O'Neal - No ALS mention

 

Blair, if you’re reading this, please understand this is not an attack on you. Tyler & Steve are simply making a point to draw more effective attention and funds back to the original purpose of the challenge––ALS. Because you have a particularly public voice, they are hoping this encourages you to update your social media channels and maybe even spread the word yourself.

After a bit of research, I discovered an interesting ripple effect to Blair’s missing ALS mention. Professional golfer, Greg Norman, accepted and completed the challenge. He called out Matt Lauer. When Matt Lauer completes the challenge on NBC’s The TODAY Show, they fail to mention ALS all together. Again, putting emphasis on the game, not the cause. Now, in fairness, they do mention that the ice bucket challenge is to avoid donating $100 to the charity of your choice, but it has nothing to do with ALS and it’s a very small part at the end of a short segment. In other words, to Tyler & Steve’s point, more attention on the fun of the game rather than the cause behind it.

A follow up segment with Martha Stewart’s participation in the ice bucket challenge on The TODAY Show (on-air) doesn’t make mention of donating anything to any organization. Tyler & Steve argue that the opportunity for ALS to reach millions is being missed as this has turned into a game for too many.

Steve Rosenfield’s frustration with the missing ALS mentions, and the game the ice bucket challenge has turned into, comes from witnessing, first-hand, the disease’s heart-breaking evolution through Steve Dezember II’s journey. Dezember was diagnosed in 2011, married his wife, Hope, and together, they’ve been battling ALS through its degenerative stages.

As I am challenged to discover more on the disease, I only uncover more reasons to donate. If you have no experience with ALS (like me), take three minutes to watch the next video. A feature-length documentary on Dezember’s journey was recently released and the trailer will give you a good idea on how ALS has affected him and his wife.

 

 

If you’d like to learn more about Hope & Steve Dezember’s battle, please visit this site.

Rosenfield says, “The ice bucket challenge was a wake-up call, but it needs to go a step further. It brings ALS into the spotlight, but only that something is wrong. I think that’s as far as it goes. What its become is just people dumping water on their head.”

I’ll close with a final video making a very similar point to Tyler & Steve:

 

Here are a few of the more prominent organizations worth looking into:

 

#keeptheiceinthefreezer

 

 

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Editor: Travis May

Photo: YouTube Still

 

 

 

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Ben Renschen

Ben Renschen is a Los Angeles based writer. He likes to bring emotionally complicated content to readers in a digestible format. He’s globe trotted for work and play. You can check out his blog, All Things Borrowed, or follow him at Instagram, Facebook, or Twitter.

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anonymous Oct 28, 2014 3:03am

Great Article,,
Really interesting

anonymous Aug 16, 2014 12:47pm

I've been somewhat aware of the 'ice bucket challenge' for the past few days. And this is the first time I've hear the purpose, and the mechanism by which the charity benefits. So, from my perspective — and before anyone attacks, its only my perspective — I have to agree the message is rather lost in the rush to play the game.

anonymous Aug 16, 2014 5:05am

I rarely post things on Facebook ect.. So this is something that bothers me as I’ve seen many complaining about this same thing, or having issues with it. Just want to say that bringing the consciousness to mutual friends, as well as other generations, ect.. Of which I’m sure are the ones who really take the ice challenge more serious(aka children), is a very good thing. The consciousness it’s bringing, regardless, is nothing but positive. So it’s a game to some…at least people are becoming aware of something they have never heard of before and likely don’t know anything about. As well, I am pretty certain that a good portion of the people I’ve seen taking the challenge have donated as well. Let’s not lay faults in something extremely positive as well as very successful and instead support anything that is even close to as successful in raising awareness and support for anything needed.

anonymous Aug 15, 2014 8:13pm

Maybe I'm just lucky to live in New Orleans, where our hometown hero is Steve Gleason the former Saint who is battling ALS, because every video I have watched has either mentioned ALS or Team Gleason. As someone who has lost a loved one to ALS I am loving all of the videos because it is raising not only money but awareness to the disease. You said yourself that you didn't even know what it was until all the videos were being posted. Imagine what that is going to do for someone who when they find themselves in a position to donate they will hopefully consider an ALS charity. So to me no matter if you donate, dump ice on your head in the name of awareness, or continue to write blog posts about ALS that is still success.

    anonymous Aug 16, 2014 5:07am

    I rarely post things on Facebook. So this is something that bothers me as I’ve seen many complaining about this same thing, or having issues with it. Just want to say that bringing the consciousness to mutual friends, as well as other generations, ect.. Of which I’m sure are the ones who really take the ice challenge more serious(aka children), is a very good thing. The consciousness it’s bringing, regardless, is nothing but positive. So it’s a game to some…at least people are becoming aware of something they have never heard of before and likely don’t know anything about. As well, I am pretty certain that a good portion of the people I’ve seen taking the challenge have donated as well. Let’s not lay faults in something extremely positive as well as very successful and instead support anything that is even close to as successful in raising awareness and support for anything needed.

anonymous Aug 15, 2014 3:16pm

Agree completely with Mark's comment above. According to a USA Today report a few days ago, 2.3 million dollars was raised from July to something like August 12th. According to a friend's facebook post yesterday, the figure is now close to 5 million dollars, all because of the ice bucket challenge. In the same period of time last year, only $25,000 was raised. This is a good cause, and the ice bucket challenge, as silly as it sounds, as ridiculous as it appears, has done a lot of good. Hardly a failure.

anonymous Aug 15, 2014 12:19am

Really get sick of these poorly researched bloggers ignorantly posting "info" on the icebucketchallenge.

The challenge was not initially about ALS. Pete Frates and friends of his and many of mine at BC made this viral by changing it to include and raise awareness for ALS at the very end of July. All those from July 2nd-15th (Martha Stewart etc) were unrelated. So saying they messed up in forgetting to include ALS doesn't follow. Not that I'm trying to help their PR – I could care less – but you're using them as a major example of this being a failure when their doing the challenge precedes the onset of the ALS version (the only one to go viral). It has raised MILLIONS for the same foundations you listed. Bob Kraft, Justin Timberlake, NFL and NHL players, and politicians (to name a few) have all done it and cited PeteFrates.org and ALS.

Stop labeling it as something it's not (a failure). Pete and his wife stated their goal was to raise awareness… that was up to them. They never anticipated it getting this big and you all are picking a fight and debating a topic that has done more for ALS than you likely ever will. I hope your goal wasn't just to write something controversial and generate blog hits… doing so makes you no better than mainstream media making big stories out of nothing.

    anonymous Aug 17, 2014 10:12am

    This was obviously yet another social media ploy to promote their documentary being viewed, ie using ALS as a way to promote yourself as a filmmaker. Way to be jerks and call people out who actually used the challenge as a way to raise awareness for the cause, not for personal gain.

      anonymous Aug 17, 2014 5:04pm

      TiskTisk,

      I appreciate the comment.

      This is far from a social media ploy for a documentary. Steve Dezember's inclusion was merely sharing why Steve Rosenfield is invested in ALS. Plus, I wanted people to see an individual story so that they could directly impact a specific ALS battle–if general donations don't interest readers. I understand how you might see it the other way around, but I can assure our intentions are not what you suggest. I apologize that it was taken any other way than intended.

    anonymous Aug 17, 2014 5:23pm

    Mark,

    Great comments. Thank you for the time and education on the topic. Seriously.

    As a writer, I can assure you my intentions are pure hearted and in the interest of furthering conversation–not controversy. Obviously, I don't expect you to trust that, but I trust my body of work would illustrate that (it goes well beyond EJ).

    Do you have any information on how/where the challenge started (pre-ALS?) I would love to learn more. In my research since this comment, I'm struggling to come up with anything…mostly because the current ALS ice bucket challenge has become as viral as it is.

    For the record, I don't think the challenge is a failure. Tyler & Steve approached me to write an article to present their opinion–donate to avoid getting ice dumped on your head. They were frustrated that this was feeling like a "game". I believed they had a valid point (as do you) so I agreed to write up the article. Of course, we knew this would ruffle some feathers as they're message is bold. I do my best to translate their sentiment. I'm hoping they jump in on the conversation here because I think it's important for them to do so.

    Thanks again for the taking the time, Mark. I truly truly appreciate any and all feedback. This is an educational process for me and others. I'm certain of it.

anonymous Aug 14, 2014 11:40pm

Love this Ben. Thank you, Rebecca