Musings on the ice bucket….


I don’t suppose there is any way you could have missed this, because it has been EVERYWHERE. And every day, I think “Surely it is waning… I am seeing the last of it…”, but for weeks, I am consistently proven wrong.  It’s in the paper.  On the radio.  On TV news and talk shows. All over my facebook feed, my Instagram.  On the way home on Sunday night – I saw two different groups outside on their lawns doing it.  It’s somewhat of a recent obsession and I can’t stop thinking about it.

I can’t stop thinking about the Ice Bucket Challenge.

Had I written about this back when it first started crossing my consciousness – I suppose I could have culled a list of people I knew who had participated – and even thrown in a couple of – *gasp* – celebrities!  But now – it’s too massive and the impressive list of people who have joined this miraculous movement is far too ginormous to capture.  It’s so many well-known people now, that somebody has taken the time to make a list for Wikipedia. Some of my favorites have been Weird Al, Jack Black, and the Foo Fighters, who did sort of spoof on Carrie – and then challenged Stephen King to do the challenge (and he has also done his own video in response).  I could go on and on and on.

When I first started seeing these videos about a month ago – it was a general charity challenge not connected to a specific cause (and it also included the consumption of two beers along with the dousing of the ice bucket). I’m not sure where those came from – or if they were connected at all – or just a coincidental anomaly.

When I started really seeing these show up en -masse – I wanted to know how it originated.  What is the story behind the movement? Well, it is the story of Pete Frates – who is battling ALS, or amyotrophic lateral sclerosis, also known as Lou Gehrig’s Disease.  He is newly married – expecting a child soon – and is not expected to live because the disease he has is a deadly one.  He is only 29 years old, and he is determined to make a BIG difference.  This movement began in support of him – by people who know him, love him and respect him – in response to his request that there be some urgency and action around making ALS a thing of the past.

As of this very moment (because it’s sure to change by the time it I hit the post button) – the ALS Association has raised $41.8 million dollars through existing donors and 739,275  new donors.  This is compared to $2.1 million during the same time last year.  Just writing that makes me want to cry for Pete Frates – for his family – for the people who know and love him,  for every person who loves somebody suffering from the disease or who has ever lost somebody to ALS. It makes me want to cry in solidarity for the gratitude they must feel to have not just the money – but the VOICE – of so many people saying it.  ALS. I am so happy to see all the people I know who have participated – Cheers to you all!!

Because I know how hard it is to watch somebody you love suffer from a disease that nobody seems to know about or pay attention to.  And I AM NOT comparing these two diseases – but people’s response is all about where they are coming from – and that is my origination.  No secret.  And I’m not the only JA Parent watching in wonder, and feeling the pangs of longing just a bit – eager to catch that viral trade wind to sail our little JA cause right into the mainstream.  Certainly, there are people passionate about other rare disease and lesser known causes doing the same thing.

So – I can’t stop thinking about it.  Examining it.  What was it about this donor centered campaign that resonated so well – that all of this could have happened?  It goes without saying that the cause it worthy… but given that so many people never even mentioned the disease in the early day videos – perhaps it wasn’t the biggest hook into this thing. There is some speculation that the timing was impeccable. It is summertime, after all – and what better time of year to engage in a little fun water play! And it is totally accessible – who doesn’t have some type of bucket or bowl and access to some ice?  It also plays on that quest we have to force other people to meet the challenge – to “call them out” publicly.  Naturally, I think it plays into something I believe in my heart and that is the fact that people, for the most part, are generous. They want to help when asked.  But there was something perfect about this time, this cause, this bucket bonanza – some magic – because otherwise, it certainly would have been done before.

There has been some pushback, naturally.  I know that my son is filming his challenge today with some friends – and here in California, you’d best be altering your challenge to capture the water for repurposing, or get lashed for contributing to our very serious drought.  And I have read that some people think that one social media campaign is really not good enough, given the seriousness of the disease – and have even pointed out that the challenge – in its common form – calls for the participant to do the bucket challenge or donate as a punishment for not completing the challenge – which isn’t the best message of philanthropy.  I think though, that even the people who were skeptical at first, have no interest in arguing against the potential benefit of $41.8 million dollars. It’s a success and I am just  happy for how much this has done.  I think people should watch this guy lead with a funny challenge intro and then talk about his ALS and how it devastates his family – if they have any doubt about why all of this was so important.

I do hope for the sake of every ALS warrior – that the movement continues.  I know it will be hard to ever live up to what this summer has meant for their cause… but if even a fraction of the 739 thousand new donors give again next year, or later….and if even one or two of those celebrities keeps talking about ALS, they will stay so much farther ahead of where they were in June.  What a beautiful, ongoing tribute to the passion of Pete Frates and his circle of influence.  Wouldn’t it be wonderful if this turned into a “ribbon season” for ALS… just like you can’t escape the pink ribbon in October – maybe summer will return again next year with ice buckets galore.  Maybe magic can stay.  Because what those warriors need is not just a summer of commitment from fickle hearts who will move along the trend highway – but season after season of people talking and giving and remembering them – until the disease is cured. Don’t get me wrong!  I would absolutely take one magical summer over a decade of shadowy struggle to get to the same place- but I hope this has some staying power.  Because the fight goes on.

And I have to admit – Personally, I have totally stopped trying to come up with whatever the next viral-social-media driven-philanthropic miracle of awareness and funding will be.  Honestly – I think given the total saturation, pun intended, of the public with this campaign – anything following too closely on the heels, or in format too similar,  will be met with bandwagon skepticism and snarky derision.

That’s not to say that I will stop thinking about it.  Or examining it.  Or trying to catch this summer lightning bug in a bottle so I can get a close look.  I think there will be another time when the stars align and magic is ready to commence again.  Because the take away for me is this – I guess it goes back to the famous Maraget Mead quote…

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it’s the only thing that ever has.”

This was grass-roots.  This started as  a bunch of people who did this for somebody they love – out of passion for him and for making a difference in the lives of others with the same disease. This wasn’t calculated, manipulated or engineered by peer-marketing reviews and test groups.  This was organic and it appealed and it just went. It was explosive – like a massive charge of dynamite. They did something silly, easy and fun to spread the word and raise some money for something serious, horrible, and barely spoken about.

I know a lot of people just like the people who love Pete Frates.  A lot of people with the same passion and drive to bring attention, bring funding, find the cause and find the cure for a disease that affects somebody they love. I see it every day – parents chipping away at this obstacle of juvenile arthritis – with lemonade stands, and speeches at the Rotary Club, and making videos to share their story – wearing T-shirts and wrist bands, beating the drum to bring the ears our way.  We may not have managed to get Oprah to respond, or have initiated a viral campaign that captured the news feed for week on end…. yet.  But there is every reason to keep going, with spoons or with dynamite – we will get through eventually.

I think Pete Frates just proved that we live in a world where that is possible.




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8 Responses to Musings on the ice bucket….

  1. Jenn Ziegler says:

    Another awesome post Colleen. I, too, have been obsessed with researching and analyzing the recent “history” of the ice bucket challenge AND owe a challenge with donation to the deserving cause!

  2. Dawn Huberty says:

    Love it!! 🙂 Great words to absorb and it’s true — the smallest group of people can change the world! ❤

  3. Janis Rader says:

    As the mother of a daughter with JIA, onset thirteen months, I share your sentiments and would love to see the world embrace and support the cause of JIA. Your column touched my heart. Thank you.

  4. Kathy Dwyer says:

    As the parents of a daughter with JIA, I thank you for putting into words, what so many of us are feeling right about now. It’s not that we don’t support other causes, and feel others pain, but we just wish that “our cause” could get some much needed publicity. Yes…Kids Get ARTHRITIS, Too

  5. Shanna Hirschi says:

    As I have watched with wonder how this crazy thing called “The Ice Bucket Challenge” got started, I think to myself, what can we do to help those with JIA …RA OA etc. It’s hard to imagine that in just 28 days they have raised nearly $95 Million dollars! That is so spectacular! But we need to come up with some way as well!
    Thank you for your incredible column…very profound and eloquent!

  6. ~Mariah~ says:

    I’ve been wondering what you thought about all of this – I figured you would be about as fascinated as I was. I think this post does a beautiful job giving this movement the credit it is due and also trying to learn from it. ~;o)

  7. Pingback: 027: ICE OR MONEY–DO YOU HAVE TO CHOOSE? | A Human Project

  8. Pingback: How Much for a Cure? | JIA Mom's Blog

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