<p>“When this started I thought it was $10 if you do the challenge, and $100 if you don’t. Now it seems to be you don’t have to donate if you do the challenge? So people are celebrating, laughing, having fun about not contributing?”</p>
<p>Wow, everyone takes it all so seriously! There are no “rules.” Dump a bucket of ice on your head if you want; don’t if you don’t. Tag your friends if you want to; don’t if you don’t want to. Donate $0, $10, $100 or $10,000 to ALS. Announce it to your friends, or don’t. Whatever. You would think that there were Ice Bucket Police ensuring that it was done “correctly”! I have no idea whether the people on my FB newsfeed who are dumping buckets on their heads <strong>really</strong> donated to ALS or not, nor, frankly, do I really care!</p>
<p>I did see the George W Bush one (he nominated Bill Clinton for it) and it was nicely done.</p>
<p>I didn’t watch Seinfeld other than occasionally, so I didn’t get the memo about the ribbon. ;
I think anything that gets us out of our comfort zone is good.
The viral videos have spurred not only contributions, but conversation and that is a good thing.
There are many people who are able to accomplish amazing athletic achievements, but for some like Tim Shaw and Steve Gleason, those days are behind them.</p>
<p>There are other movement disorders besides ALS, and it can be difficult to get a diagnosis if you have one of the ( relatively) milder forms.
I have fibromyalgia along with arthritis and it impacts everything I do.
<a href=“Well - The New York Times”>Well - The New York Times;
It is not as swiftly progressive as ALS or MS, but it is there everyday like a shadow, of course that could also be because I have a major depressive disorder. 50% to 70% of fibro patients have a history of depression.</p>
<p>Just last night I attended a fundraiser for a small foundation that funds movement therapy for people with neuro/brain disorders. Before I had my TKR, water movement was about the only thing I could do.
Now I am much more active, but the fibro still limits that to less than 1/2 of what I was able to do before.
<a href=“Plus One Foundation – The Ripple Effect”>http://plusonefoundation.■■■■■■■■■■■■■/author/plusonefoundation/</a>
Its very encouraging to read the stories of others.</p>
<p>But still, more awareness ( & funding) can bring more research and hopefully better treatments.</p>
<p>About the “jumping off a bridge thing” I remember seeing a cartoon once MOM: “if all your friends jumped off a bridge would you too?” KID: “YES, my friends are pretty smart and if they are jumping it probably means it’s the safest thing under the circumstances.” </p>
<p>I can see why some people are uncomfortable with this. There is a kind of superficial, self-indulgent character to the ice bucket challenge (and all other viral social media ‘activism’ I have seen). And, there definitely is a difference in my mind between declining a cookie and declining to support a charity - the chain letter aspect feels kind of tacky.</p>
<p>HOWEVER, that downside is a characteristic of life today and at least this campaign has increased awareness of an awful illness. I do not believe that this will discourage people from donating to other causes; any trade-off is probably just with other social media pursuits. Ice bucket videos are a lot better than game invites, ‘share if you agree’ posts, etc. :)</p>
<p>What about stores where they ask you loudly and in front of other customers if you would like to donate a dollar to cure cancer or feed starving children? “No thanks, not today,” seems inappropriate. I shop at a store where they ring a bell and start cheering loudly when someone says yes. It’s a little bizarre…and it’s real life. </p>
<p>I HAVE told store clerks that the reason I don’t donate through store collections is that I am opposed to them getting tax deductions for money that they collect from customers.</p>
<p>I’ve got mixed feelings about the ice bucket campaign. It is raising money and awareness, but it has also become a status thing, and people do it for the “let’s jump on this bandwagon that’s popular for this short time” and then they will forget all about ALS. We live in a culture of quick sound bytes and the sob story of the day/week. My youth group similarly stopped participating in a nation-wide mission camp program because after a few years it seemed like the organization was using the people we were “helping” simply as a tool to reach the teens - the work done was often shoddy and left us with a bad feeling.</p>
<p>As for some of the celebrity participants in the ice bucket challenge: I just watched former President Bush II’s on facebook and can’t help wonder how cold that water actually was - not an ice cube in sight.</p>
<p>Don’t get me wrong, I’m not a W fan by a long shot, but considering the man is pushing 70, I think I can give him a slide on not having any ice in the bucket. </p>
<p>If I were tagged and chose not to participate, I’d let that comment just fall to the floor and ignore it, or I’d say something brightly like, “Looks like lots of fun, but I’ve been so slammed at work! Thanks for thinking of me and hope to catch up soon!” And if the person continued to pester or make an issue out of it – well, they look like the jerk, then, not me. </p>
<p>I have a young coworker whose mom died from ALS 2 years ago. We are doing it in her memory and as a way to have the work team become more aware of what someone close to us has gone through.</p>
<p>I did it! My son filmed it, and dumped the water on me.9 He’s editing it now (he’s a film major) and I’ll be able to put it up shortly. Cold, yes, but not so bad, and we DID use a lot of ice. My daughter’s been tagged, and she’s one that doesn’t want to do it, but she’s kind of a local celebrity, so she’s got extra pressure. I think she’s doing it with her best friend, so I hope it winds up being fun. I get what people say about feeling pressured, but this should be a lighthearted way to make money for a good cause, and I think it reflects more on the person who just won’t let others off the hook than the challenge itself.</p>
<p>I like what poetgrl said about being a part of life. I tend to sit on the sidelines, so I am glad I participated. </p>
<p>Okay, realtalk–haven’t been challenged. Wouldn’t dump ice on myself if I was. Privately give and have given up to my abilities, not going to tell anyone IRL. Glad money is going to ALS; it’s a terrible terrible disease.</p>
<p>But what popped into my head when I read this was “The Lottery.” Groupthink is tragic when it leads to killing, and wonderful when it leads to saving. But each of these can happen without groupthink. I have chosen throughout my life to do what I can to help, where help is needed. That groupthink does all this good is, as I said earlier, weird–to me–because I can’t imagine why it takes that to move people. Fantastic for those who are helped, but puzzling to me. But people frequently puzzle me.</p>
<p>And, but, groupthink is why abasket has over and over tried to describe how it feels to him/her, to over and over be told–why do you think that way??? WEEEE don’t (what’s wrong with you???)</p>
<p>Which I think is the most interesting thing about this thread, frankly. (yes, I know, the giving is the most interesting/important thing-- IN REAL Life, but on this thread, it’s the soft pressuring.)</p>
<p>And I’m really, really looking forward to the responses.</p>
<p>Just chiming in a bit late, as I just got home from my son’s cross country wedding. I did the ice bucket challenge last weekend. In fact, I did it with my two brothers during the after-party DH and I threw for our friends and family following the wedding. Our mother died of ALS, and my aunt, not blood-related, died a couple of months ago after suffering with ALS. I couldn’t be MORE thrilled with the ice bucket challenge. Those of you who are unfamiliar with the disease and have never known anyone to die from this disease, you can thank your lucky stars. It is the MOST horrendous disease in the world. I’m saying this as having a non-smoker father die from lung cancer.</p>
<p>The mind functions as well as ever while your body dies around you. This is a disease with no known cause and no known cure. This has been going on for decades and decades with very little progress. There is only one approved drug currently available, and it seems to add a couple of months lifespan for some patients. Big deal. I have a son who will be starting to work at one of the pre-eminent hospitals in ALS research shortly. He will be running one or more clinical trials.</p>
<p>ALS has been, until this ice bucket challenge, an orphan disease without the funding needed to provide research which has been desperately needed. Those of you who have donated, whether you have dumped ice water over your head or not, thank you from the bottom of my heart. May you never have to watch someone you love waste away from ALS. Those of you who are reluctant to dump a bucket of ice water over your head for whatever reason, that’s OK. Fortunately, many people have stepped up to do this and donate. My son who will be working on research and who has spent previous summers doing so, says that the ALS Association is very careful with the money and will carefully work to see that the money goes to areas that most need it. </p>
<p>My fiance just did it. At the last second, our forever foster German Shepherd mix ran out and got drenched. Now my whole house smells like wet dog. Dog is not happy lol </p>
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