Many of you have probably heard of the Ice Bucket Challenge. You have probably seen YouTube videos of them and of course “Ice Bucket Challenge Fail” is one of the many “funny” videos that have gone viral. Celebrities joined in and the challenge began to take over social media. However, how many of you know why there is such thing as the Ice bucket Challenge?
The Ice Bucket challenge is a way to raise/donate money to ALS research. ALS stands for amyotrophic lateral sclerosis. “People around the world donated more than $100 million to fight this deadly ailment during the Ice Bucket Challenge of 2014“(pg 53-54) Though, do the people who participated really know where that money is going to?
According to this Article, the money was split into Patient and Community services (programs that offer money to local ALS association chapters, augmenting ALS patient education materials, and providing grants to ALS treatment centers),Public and Professional Education and processing fees. Finally a large amount of that money was given to fund further research. Nonetheless, how do we know that the research being done is accurate. “The search for a treatment for this deadly degenerative disease is rife with studies so poorly designed that they offered nothing more than false hope for people essentially handed a death sentence along with their diagnosis.” (pg 53) Could, potentially $77 million dollars be going to waste?
I had seen this issue pop out in several other posts. Including Esmeralda R post, “Cold water for our future”. Where she mentions that many scientists are cutting corners when doing an experiment. Why is this this happening? First of all Institutions need to check on their labs and make sure research is done correctly. “Almost everything scientists have tried for ALS has failed (other than one drug with very marginal benefit)….ALS Therapy Development Institute (ALS TDI) in Cambridge, Massachusetts, began investigating that question.” (pg 55) It surprised me that ALS TDI had never really checked on the studies being done. It made me wonder how many other non-profit research centers don’t annually or constantly check to make sure studies are being done right.
Most importantly, there is not enough money to do experiment the correct way. “It’s so expensive that they choose to do the experiments poorly….. ,and funding was stretched so thin that scientists said they didn’t get as much as they needed to do their studies” (pg 57) Even with funding all of these donations. It is still not enough. In his book, Rigor Mortis, Harris mentions a single test costing $112,000 dollars. That’s just one test. Imagine those $77 million from the IBC being spread over to many experiments. No wonder there is not enough money. This completely changed my P.O.V. on this subject. It had never occurred to me that research is so expensive.
In conclusion, I think we have to first focus on clearing away those false reports, so scientist are able to obtain a fresh start. Our biggest obstacle, I think is getting enough money to scientist who need it. That way they wont have to cut corners. I understand now that research is costly and even with $77 million dollars, it wont last long when its having to be spread to many researches.
StarPathDesign 
This is a very well constructed post. I like how you added the contribution of the social media to the book, it was very nicely done. Although, I do have a question for you, did you participate in the ASL Ice Bucket Challenge? Do you approve of the way that the money was made? Did you contribute to the cause? What would you have done differently? Again, this is a very well done post and I really like the effort that you put into this. -Danna M.