The ALS Ice Bucket Lie

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I just read today that “ALS Admits 73% of donations are not used for Research(see below update), and it really ticked me off. Earlier this week they tried to patent the Ice Bucket Challenge but later dropped it when they were criticised.

Let me be clear about one thing, ALS is a horrible disease, and it deserves all the attention in the world but ALS did not come up with the idea. Back in early July, my buddy Jim did it in support for Molly and another friend fighting cancer.  He called me out, I did it and so did my friends. Here is the point though, Jim and I gave people a choice to donate to any cause they wanted to. It was funny watching the kid’s reaction dumping  cold water on their dads, and we all donated to the cause that was close to our heart. The best part was when my daughters dumped cold water on Scott Santarella, CEO of the Bonnie J. Addario Lung Cancer Foundation, and NBC filmed it.

These were all done in July, before ALS started getting a bunch of publicity starved celebrities and CEOs to jump on the bandwagon. All of a sudden it was the thing to do, and the cause was lost. Everybody was trying to out do the last person and some people even got hurt.

The ALS foundation owes good publicity this week. They should donate more than 27% (see below update) of the $90M to research, because not a single person will dump water on their head next year. At least not in CA, because there won’t be any water left in 2015.

QUICK UPDATE:  It has been brought to my attention that the 27% donation may have been a misunderstanding. I don’t think this fact makes it too much better for them as everyone was under impression that the entire amount was suppose to go to research, and they still did try to patent the idea as their own.

3 thoughts on “The ALS Ice Bucket Lie

  1. If this “ice bucket challenge is a scam, whomever is involved, should be ashamed of themselves! !!!!!!!!!! I & I’m sure anyone else who have viewed many people doing this, obviously assumed ALL the $$$$ was going to ALS research!!!!!!! I can’t imagine the company/companies doing research for ALS, not to mention these patients, suffering from this absolutely, horrific, painful & terminal disease, would be horrified if this “ice bucket challenge”, is a scam of any sort! Either show proof online, ALL the money IS going to ALS research, or I’m sure there won’t be anymore “ice bucket” challenges! BTW, where is the rest of the money going if all isn’t ALL going to research! So disappointed if this is true! A retired RN, who suffers from something much less devastating, Fibromyalgia, but it’s a chronic severely, painful incurable disease & I don’t hear of ANY research for it at ALL! I just hope the $ is going to where it should be!!!!

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  2. Research is not the only thing that is needed. People with ALS need a significant amount of care. The chairs that can help them get around and communicate are not cheap by any means and a lot of these foundations help to give patients the technology they need to survive. I don’t feel that all of the money needs to go to research. My husband has stage IV lung cancer and we have a son that is almost 2 – We watched a story on Steve Gleason back in January that has given us inspiration as a family. #NoWhiteFlags I am thrilled that ALS has received so much media attention and only hope that we can raise that kind of awareness for Lung Cancer as well. It is unfortunate that there are so many horrible things going on in the world, and so many things that need attention. As much as I want attention and awareness for lung cancer I am not mad at others that have gained that success. I only hope that the lung cancer community can reach that point as well.
    Here is a link to the origin of the ice bucket challenge:

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