<p>One of my best friends has had ALS for 15 years (a very long time considering it has a 2-5 year prognosis). Aside from the money that has been raised, the challenge has made people aware of the disease. Most people have never heard of it and it has been an extremely underfunded condition. There are few resources for those who have it and it can be financially devastating as well as physically and emotionally. It is always fatal. I have watched my friend go from a vibrant young mother of four young children to a helpless, wheelchair bound woman who cannot feed herself or even hold her head up. She is on a trach and cannot breathe on her own. </p>
<p>I’m all for the challenge. I agree that if it bothers you or bores you, stop watching or donate to something else.</p>
<p>I think the ice bucket challenge was a great idea for raising awareness and money for ALS. I was amused by it–thought Bill Gates with his ice bucket contraption was funny.</p>
<p>“I guess I don’t understand why this is weird. There are LOTS of things that trigger us to give to something we might not normally think to give to.”</p>
<p>I’ve done two of the 60 mile breast cancer walks, for which you had to raise a good sum of money - I think $2,000 - $3,000. I wouldn’t have raised that money otherwise, and my friends and family wouldn’t have given me that money otherwise. Yeah, I get that a lot of it goes to the overhead for the walks, but so what? They still come out ahead.</p>
<p>Every charity 5K I’ve done was for some cause that I wouldn’t have necessarily donated to. I mean, I don’t really care about the Nearby Local Town YMCA, but if they put on a fun run and charge me $35, heck, I’ll go do it. Everyone’s happy. It’s a win-win. </p>
<p>I doubt I’d actually do the ice bucket thing and videotape myself, but if other people want to and they’re having fun, I really don’t see anything to object to.</p>
<p>Count me as another who is happy to give ALS a chance for the money spotlight. It may be a long time before it gets this much attention again. </p>
<p>I think it was ESPN but one of the sports shows did an extended interview Sunday (like 20 minutes) about ALS and Peter Frates who was a baseball player was diagnosed in his early 20’s. It was really very shocking to see the total and complete breakdown of his body. </p>
<p>“I agree that this is too much like a chain letter. I’m hoping that no one challenges me, because I don’t want a bucket of ice water on my head, and there are charities and nonprofits that are more dear to my heart than this one – I don’t want to be publicly forced or humiliated into giving money.”</p>
<p>I find this statement odd. If someone challenges you and you don’t care to participate, then you needn’t participate in either the ice-bucket or the money-giving. No one is keeping score, and no one really cares. I haven’t been tagged on FB, and I doubt I would do the ice-bucket thing, but if I were tagged? I’d smile that someone had thought of me, and move on with my day. I wouldn’t feel publicly forced or humiliated into doing anything. I’d participate if I wanted to, and go on with my day if I didn’t. </p>
<p>The problem I have is this. People endlessly comment on those who do the ice bucket challenge and presumably donate $10, but those who decline the challenge but post they made a $100 donation are ignored on Facebook. Sends the wrong message of what truly is important about this endeavor.</p>
<p>I don’t think people who just donate are ignored. A friend of mine posted a video on FB of herself writing a check and then holding it up to show that it was made out to ALS. Her comment was–I’m happy to donate but I have no interest in pouring a bucket if water over my head. She had a huge number of likes. </p>
<p>I think it WAS a wonderful idea that brought much awareness and resources to a dreadful disease. The unfortunate part is that the longer is lasts, the more it might turn into a narcissistic affair with serial copycats. </p>
<p>In a way, I wish that the ALS would propose to suspend the 2014 version but announce it would be an annual weekly event. And I wish other would respect both the novelty and the success of the original one by not copying it at nauseam. This said, I would not doubt that someone might point out to a prior icebucket challenge that did not get as much publicity. </p>
<p>“The problem I have is this. People endlessly comment on those who do the ice bucket challenge and presumably donate $10, but those who decline the challenge but post they made a $100 donation are ignored on Facebook.”</p>
<p>Oh well. Shouldn’t their satisfaction that they’ve done something good be sufficient? Why do they need to be praised? </p>
<p>Romani. I know it was neither started by the ALS (nor by Peter Frates, fwiw) as my comment did intimate. Thr origin of the challenge is a lot less altruistic, but that part hardly matters. </p>
<p>I happen to think that the social media part is way over the top, but that is just a sign of the times in which we live. The good and the less good parts! In a way, it seems odd that the donation was portrayed as the consolation price. </p>
<p>On a last note, people interested in finding out what some have done to combat this disease might like this story. Go to page 19 and read the story of Augie Nieto: </p>
<p>What does it hurt? My kid and his buddy were challenged yesterday and just finished their video in my back yard - I even had left over bags of ice from a camping trip to donate. The only inconvenience is 4 soggy bath towels for me to launder. More money will be donated to a great cause and they had a blast and each challenged 3 other people. I don’t think it’s a “sign of the times” in a bad way at all . . . why not put the exhibitionist youth movement to good purpose?</p>
<p>“I happen to think that the social media part is way over the top.”</p>
<p>It’s a video on Facebook. I’ve watched some of them in my feed, and others I’ve ignored because, well, I kind of know what it looks like to dump a bucket of ice on one’s head. It’s pretty easy to ignore and move on with your life if it’s not your cup of tea (bag of ice?).</p>
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