Young man with familial ALS does ice bucket challenge

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I’ve watched a lot of buckets of water being dumped over famous heads with nary a bit of ice in them, and not all that much water really. From where I sit in my warm and comfy chair, this is cheating. They can better express their empathy for those afflicted with ALS (and in penance for their wussiness) by doubling their checks.

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This has been an amazingly viral campaign, hope it has a lasting effect with enough interest and funding to lead to a real cure.

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Edit: and one more, but it’s a good one:

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He did a great job with his video. I am so glad he said how much the campaign means to him, because even though it has been a fun viral thing going around, some people have questioned its value. Well, take a look at what he has gone through in his life, how much it must mean to him to know that all these people are learning about this awful disease, and doing something fun around something that is just a world of suck.

Xeni - so sorry to hear about your dad having ALS.

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Well, I usually avoid all this viral shit like the plague, but TIL ALS (which I hadn’t heard of) is also known as Lou Gehrig’s disease (of which I had).

So it’s chipped away at one moron’s ignorance at least.

BTW props to Mr Sheen.

Thanks for sharing your story and this video Xeni, and thanks to Antonio for sharing so much of himself, his family and his experience. At 23 I lost my 53 year old father to ALS. The cruel devastation this still incurable, nearly untreatable disease inflicts on the victim as well as his or her supporting family is like no other.

So many of the pieces I’ve seen in the second wave of coverage of the #ALSIceBucketChallenge have been written at arm’s length – discussing the tradeoffs of ALS versus other charities & other diseases; wondering if it’s “worth it” to donate to this cause (given what else is going on in the world, the relatively small number of victims, etc.) – as if the experiences Antonio, his mother, and all other ALS victims and families will go through (watch that portion of the video again) were unimportant background noise in an undergrad econ class hypothetical.

While policies and companies might prioritize causes and diseases with greater numbers, please don’t begrudge the momentary light being cast upon a population that has suffered with little hope or support in the near dark for 75 years.

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