Monday, August 25, 2014

Just Over Here Beating A Dead Horse, AKA: #ALSIceBucketChallenge

The phenomenon seems to dominate my Facebook news feed and Instagram daily. Bucket after bucket, nomination after nomination, all with the hashtag #ALSIceBucketChallenge. At first, it was funny, sort of inspiring, and yet, I wasn't enthralled to learn more, donate, or participate.

I had heard of ALS, I knew it was fatal, scary, and incurable. One of my closest college friends (and my sorority Big) lost her father to the disease. We've talked about how hard that was for her family and the challenge it was watching the effects of the disease on her dad. I knew that ALS was synonymous with Lou Gehrig's disease and that, ultimately, it shut your body down while your brain stayed in tact.

Cockily, I felt like I knew enough. That I'd participated in the casual fundraiser within our chapter in memory of my Big's dad. That I'd read facts about ALS during awareness weeks. But, like many things in life, I didn't take that step further to learn more and educated myself.

My opinions about the #ALSIceBucketChallenge looked much like those you see floating around the internet in educated -errr, opinionated- articles. Over the course of two weeks, they've varied and changed from the idea of "slactivism" to celerity namedropping to selfish attempts to go viral. WE'RE IN A DROUGHT they say, loud and boisterously, that we're not really doing anything simply wasting water, that it's just a glorified wet t-shirt contest that isn't educating or bringing awareness to anyone. I heard those arguments. And I've ranged from agreement to outrage.

But, like any good ol' wanting to be smart girl, I decided I wanted to figure out how this #ALSIceBucketChallenge started, where it's roots are, and maybe, there, I'd see the value.

It went viral with this man. 
Pete Frates.

If you don't have time to watch the seven minute segment ESPN did on him, here's the short story:
Pete is 29 years old and was diagnosed two years ago. He can no longer walk or talk and requires 24-hour care staff to assist in getting through his day. He's married, expecting his first child, and dying all at one time. That's heavy, heart-pulling stuff when he was just two years older than me when he was diagnosed. Four years older as he looks at fatherhood and fatal effects of his disease.

He's been a face of the challenge -speaking honestly about his experience with the disease, bringing awareness to it's difficulties, and making it relatable to us: a young, athletic, excited generation. The disease is rare, but can happen to any one of us, even a promising baseball player with a bright bat-yielding future.

Originally, the #ALSIceBucketChallenge was both a charge to dump ice water over one's head AND donate to the cause. Like a good old game of telephone, the dares have changed, claiming water or money. The challenge was an attempt to raise funds for research and assistance in medical costs for families suffering through the disease as well as awareness. And, I believe, it's done both as well as coincidentally provide encouragement for the patients and their families suffering from this disease. With a total of $15.6 million dollars raised in just a few months and conversations about ALS surfacing on major news outlets as well as all forms of social media, the challenge seems to be a wondrous success.

Sure, it's not educating everyone, it's not bringing awareness to the masses per say, but it brought both education and awareness to me. And my guess is Pete Frates would be happy that just one person -me- be a bit more educated about an otherwise mysterious disease. And, with that, I'm stepping off my soapbox and back onto level ground; but not without a little encouragement for you to go and google the hell out of whatever might be tugging at that curious bit that lives inside of you.

Oh, also, if you didn't make it through the film: Pete Frates took the #ALSIceBucketChallenge himself. And that's his adorable pregnant wife lifting the bucket for him since he can't do it himself.
Interested in donating to the ALS Foundation, find your opportunity here

And finally, for the sake of a good laugh after a hard conversation, this is my favorite compilation of #ALSIceBucketChallenge fails, much thanks to BuzzFeed.

18 comments:

  1. My opinons are right there with ya girl! I am glad that it has raised awareness to such an awful disease (I too had a friend who's father was taken from him by Lou Gherig's disease). I honestly, though, had no idea that that is how the whole ice bucket challenge started, and I think that is so stinking awesome that that is how it all started! And his wife is so adorable in the video!

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  2. Katie @ A Beautiful Little AdvAugust 25, 2014 at 8:24 AM

    I love that you dug and found the roots of the challenge! I wish this was more publicized. My opinions have gone the same route as yours - glad it's raising so much money but a little angered at people that are using it as a "look at me, aren't I such a good person?" tactic. But it's working, that should be the highlight.

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  3. This was really good, thanks for doing the research. ALS/motor neurone disease is a horrible disease. I understand why some were getting annoyed by the ice bucket challenge (when so many other things were happening at the same time with less press coverage. However, I think the challenge has been such a wonderful thing raising awareness and money. x

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  4. I pretty much second every word of this! I too love that it is working, but I hate the whole "LOOK! I'm doing something great!" I think that we ALL should be doing great things daily for a whole wide range of causes. Lately, I've become a little overwhelmed at all the good causes that I wish I could write a check to and ALS is only one of them.



    -Kate
    www.theflorkens.com

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  5. This is really nice. Thank you for doing a post on this. I get that the challenge is a fun way to inspire people to donate but when the skip the education part and donation part it really just underminds the whole thing.

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  6. My heart is bursting over here. I had and have similar mixed opinions, but knowing the roots now makes it easier to understand. Thanks for sharing!

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  7. My friend actually sent me this video after she shed a few tears. I wish this video was spread around a little bit more. I love that the challenge has raised money for ALS. My only issue with it has been the way people approach the challenge. I've seen many videos that fail to even mention ALS or even how to donate. I think many people have been too caught up in being one of the cool kids that get to participate and forget what the actual intent is. I'm always so happy when people ACTUALLY mention the cause and donate. Hah. :)

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  8. I didn't know that that's how the challenge started - it's really cool! I agree with you in that, while it might not reach everyone, I definitely learned more about ALS because of the challenge!

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  9. I've had some mixed feelings about the challenge, as you did, but overall I think it's had an amazing and positive outcome for the cause of ALS research. My first response when a friend tagged me (before it blew up and I saw it everywhere) was that it seemed like slacktivism. All she mentioned in her post was that the Ice Bucket Challenge was to "raise awareness of ALS" but there were no facts shared, no clues about what the ALS connection was, etc.

    At the same time, from a marketing vantage point, the idea of a challenge like this is so incredibly savvy that it blows my mind. It taps into research on charitable giving saying that Millennials are more likely to give to causes when they know their friends are giving. It harnesses the power of social media in a way that has concrete results (last I checked they'd raised over $71 mil in IBC donations). While I agree that it is far from perfect (and I love that you shared the original video so people could read the story behind it), it certainly has accomplished something fantastic. Really glad you posted on this!

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  10. I think many of us have definitely experience mixed emotions about this whole event. Definitely there are plenty of people just doing it for the fun and fame and not taking it seriously--but many ARE and many obviously are donating. A long-time friend of mine has been working with ALS fundraising for many years and is thrilled by how much awareness and donations that this seemingly trivial online challenge has raised. I've also had the privilege of seeing it go worldwide--many of my friends are in SE Asian countries which generally have less education about and research going into these diseases, and it's been very interesting to watch them all getting involved and donating.

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  11. Isn't it funny how following the trail back to the beginning can lead to such interesting tales? ...Something I wasn't always good at doing, but that I'm now enjoying making it a habit so that I'm a better conversationalist (sort of) and aware of the larger picture.. Because sometimes it's pretty and sometimes it's not. :)

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  12. YES. I think that people love to talk about themselves (I mean, I do) but there's a balance between doing something good for someone else out of the depths of your heart and doing it to seem cool or special or trendy... Like, yes, awesome that charity is happening, but the show can be exhausting to have to watch over and over again. :)

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  13. YES. This should be a YEAR-ROUND attitude or lifelong support instead of a momentary trend. Philanthropy is a vital part of community, surely, but it's something best cultivated slowly with long-lasting effects than just a rapid fire social media frenzy.

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  14. YES. I think realizing that there were other hot button issues going on in the press at the same time is SO VITAL because it effects our attitude towards everything else... And we all know that there are "priorities" we assign to certain stories over others (if that makes sense) and when the news shares stories otherwise it can make for tension. :)

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  15. I love you.


    Oh wait, too forward? Girl, yes. Education and donation is what makes efforts like these so wonderful and more long-lasting than the 30 seconds of cold. :)

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  16. How about the videos where they say ASL? Like American Sign Language I guess? Those are the one's that make me realize that the education part is SO LACKING and surely the donation isn't following... I had friends who's kids participated -something I'm not against- but when they aren't sharing the larger context with them, I feel the effort becomes futile.

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  17. Seeing the way that it took off made me realize that the worldwide web is doing great things for the cause of ALS (and other things). It warmed my heart to see the way that people embraced participating in the fundraising efforts and raising awareness (two things that are so valuable), but I struggled with the way that it became a name-dropping show for others... I guess that is the case with anything and everything, but I'm choosing to focus on the positive! :)

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  18. The outcome of the challenge has truly blown me away... Especially after working in a fundraising office in college and realizing that getting people behind a cause can be extremely challenging. It's been amazing seeing the way that the wild fire of excitement passed from person to person, state to state, nation to nation because those boundaries can be so tough to pass over.

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