I recently came across the following post on my friend's blog, My Sentiment ExactLee, and I had to share it because it opened my eyes to an entirely different perspective on the frenzy over the Ice Bucket Challenge to strike out ALS. I've copied it below, with the author's permission.
I have an enormous amount of empathy for anyone suffering from any disease, including ALS, but after reading this post, I worry the hoopla has turned into more of a fad than anything else, and I wonder how much it will really help those suffering from this disease. Millions of dollars been raised, but funds to research this and others diseases have been cut at the National Institutes of Health, according to some reports, and these donations are going to a charity. Don't forget to comment below and tell us what you think once you've read this post!
You’ve seen it all over the internet and you have probably even seen it on shows like Jimmy Fallon. Robert Downey Jr and even Bill Gates have posted videos of themselves on YouTube pouring ice over their heads in support of ALS otherwise known as Lou Gehrigs Disease. The challenge is this: you either donate $100 to the cause or you pour a bucket of ice water over your head. I believe at this point you are supposed to do both. Of course you video tape yourself and then when you are finished you challenge someone else.
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Let me first start out by saying that this challenge has raised both an enormous amount of money and awareness for the ALS cause. Whether it has raised any education is still a question.
As of Monday 08/18 the Amyotrophic Lateral Sclerosis Association reported raising 15.6 million dollars compared to the $1.8 they raised in the same amount of time the year before. The organization has stated this money will allow them to “Think Outside the Box”.
Approximately 5,600 people are diagnosed with ALS annually accord to the ALSA.org website. As of right now the disease is incurable rendering the patient weak with paralysis of the muscles of the limbs and trunk and finally speech, swallowing and breathing. The lifespan of an individual diagnosed with ALS, which does not discriminate in any way, is 2-5 years and possibly more. The money raised will hopefully help the scientists find a cure.
Now I’m going to say the hard thing that a lot of people are thinking but so few will say out loud. ALS is a rare disease. It isn’t less important than other diseases but it affects few people in America in the grand scheme of disease. According to the article above there may even be a discrepancy between how much the ALSA states at 30k compared to what the CDC states as 12k.
So why ALS? How did ALS get the front seat in the great big charity parade? They have raised 15.6 million dollars for a disease that 5,000 or less people succumb to each year. Is this all because of an accidental viral marketing campaign that has hence turned into a remarkable fad? It has been said that this sensationalism has cannibalized other charities and now other diseases and causes will suffer. I can only wonder if next year at this time people will still be donating. Will the charity have consistent donations from here on out?
This is where my article becomes more of an opinion piece. However I am willing to bet a lot of people still read this and agree even if they won’t do so out loud. And maybe not with my choice of cause but with the point I’m making.
American Transplant Foundation Why I Wont Be Participating In The ALS Ice Bucket Challenge!
I would have liked to see a viral marketing campaign that helped a larger group of people Nation wide.
Did you know that right this moment there are more than 122,000 people waiting for an organ on the lifesaving organ transplant list? We can do something about this. We can all do something about this. In one single day, with no ice water and no monetary donation, we can all take one step towards saving lives.
All you have to do is sit down with your family and have “the talk”. Explain to them why donating your organs is important to you. Check your state laws and if possible check the box on your driver’s license that tells the hospital you are an organ donor. However, if your family isn’t on board with this decision your wishes may not be fulfilled. UPDATE: I’ve had people question me about the previous sentence. While your family may not be able to override your decision to be an organ donor, they can make it impossible to donate your organs by making medical decisions that could deem your organs useless. Your best bet is to talk to them and if possible write up your expectations and have them sign it along with your own signature.
Since I’ve been writing this post three people have been added to this list, that is 1 every 12 minutes.
So if you choose to stand with me and have “the talk” with your family members please remember you could be saving the life of up to 8 people and each of those people are someone’s child, mother, father, brother, sister and best friend.
The most important thing to remember is this: charity of any kind should be done out of the goodness of your heart. Not because it is the new fad or because someone is calling you out on the carpet. It is up to you to make the decision to donate to anyone, in any way, at any time.
Here’s why I won’t be participating in the ALS Ice Bucket Challenge, it simply is not my charity. My charity is Organ Donation and The American Transplant Foundation. And besides, I’ve never been very trendy so why start now. — Lee Allport, www.MySentimentExactLEE.com