In 2005 I went to visit my friend Playford after hearing he was retiring due to an illness, that day was the first time I heard of Lou Gehrig’’s decease, as ALS (Amyotrophic Lateral Sclerosis) is more commonly known.
I still remember that day, I remember talking to my friend and listening to his explanation as somebody who knows he’s been given a death sentence and still has decided to face it with hope and a smile.
I remember very well as we walked to his car that feeling of wanting to give my friend more than just words of solidarity and a hug and trying to contain my tears as I said, “I’m here for you my friend”, even though I had no idea what to do.
After that day I made a point to learn about ALS, looked up Lou Gehrig (who I had never heard of even though he was a famous NY Yankees player), joined Playford, his family and friends in local ALS walks, visited with him a few times and saw how the disease took him away.
I won’t tell you Playford’s story, it’s not for me to tell and in all honesty, there are plenty of people who could tell you more about his story than me, who visited him more than I did and took care of him much more than I did, but the reason I use his story is to let you know that there are worse ways of learning about ALS than through a viral campaign, so maybe you agree or disagree with the campaign and maybe you are now worried about the children in Africa and other parts of the world which I applaud and encourage you to do something about it like checking this article: 7 Water Organizations You Should Know
I would like to point out, however, that in most cases, the only reason some people have any opinion about the Ice Bucket Challenge is because the ALS campaign has been effective.
Why the Ice bucket challenge?
Anyone who knows a bit about fundraising campaigns and social media knows that in order to make something viral there are a couple important elements: 1- Must be out of the ordinary; 2.- Must be simple to repeat; 3- Word of mouth is the most important reference.
The ice bucket has all three of these elements, hence the quick spread, so while I understand some of the criticism about people not taking it seriously and such (which is bound to happen with anything viral), the effectiveness of the campaign cannot be denied even by those who, by virtue of the campaign, express their disagreement with it and yet have come to learn about ALS through the same campaign they disagree with.
Yet a more powerful justification for the ALS Ice Bucket Challenge is this video of the man behind the challenge:
The Ice Bucket challenge has raised a historic amount of money in order to fund research toward a cure of ALS. Since ALS only affects an small portion of people in the US, the pharmaceutical companies don’t consider profitable to spend millions in research for a largely ignored illness, so this hype might just be what the ALS community needs in order to find a cure.
This is not the first or last campaign, to bring awareness to this disease, you can be sure there has been a “Walk for the Cure” somewhere close to you, but chances are you never heard of it because only those “affected” by this monster tend to know about such things.
The challenge, in it’s simplicity, has worked. Let’s remember that there have been “celebrities” affected, yet it has not had the viral effect that the current campaign, but let Bo Stern, whose husband suffers of ALS tell you why a quite, anonymous donation isn’t enough:
I get that they’re cranky, but I think maybe they don’t realize what it’s like to face this insidious disease and then realize that it’s nearly invisible to the rest of the world. As I watch my husband become entombed inside his own body, I feel desperate for people to understand that this sort of inhumane condition exists. But for some reason, while everyone acknowledges it’s one of the worst fates imaginable, funding for research and patient care is nearly nil. I recently mentioned to a doctor that my husband has ALS and she first looked confused and then said, “Oh, that’s Lou Gehrig’s Disease, right?” Right. Why does she -a doctor of medicine – still only know it by Lou Gehrigs Disease? Because we humans need to associate things with people. It’s easier that way. That’s why the celebrity faces and personal challenges happening in the ice bucket challenge are so effective at bringing in money. And if someone gets to look good while plunking their $50 in the ALS tip jar, I have zero problem with that.
Because here’s the deal: We are in for the fight of our lives with this monster, and the very LAST thing I want is for people to give quietly, anonymously, and then slink away. Raise the roof! Raise a ruckus! Call all sorts of attention to yourself! I will be happy for you and every Facebook like you receive, as you nudge ALS an inch or two closer to the collective public consciousness.
You can read the full article here: http://www.bostern.com/blog/2014/08/15/what-an-als-family-really-thinks-about-the-ice-bucket-challenge/ it’s worth the time.
So get with it!
Go here and donate to the ALS Association, accept the challenge, record it and share it, make more people aware of the disease and help those who are counting on each one of us in order to give them some hope for a cure like this final video that I do hope you watch and on behalf of everybody affected, THANK YOU!