My Ice Bucket Challenge misgivings

I’ve been trying to put my finger on why the ice bucket challenge bothers me so much, and I’m starting to figure it out.

Before I get into that though, you need to read this:

(AP Photo)

(AP Photo)

I agree with *most* of what Scott Gilmore says here, but I’d like to make an amendment. He argues that since ALS is a rare disease, “research is not an especially great need in public health.” For anyone who doesn’t know someone with a rare disease, I suppose it would be natural to assume you’re doing a better good by giving your money to research a disease that kills more people. On the flip side of the coin—as someone who knew children with a rare disease—I understand how helpless and heartbreaking it feels when you realize there’s no cure and virtually no funding for research to find one.

(To me, this popularity argument feels like it falls in the same category as all the donations that flooded in for the families of the victims of 9/11, but the far fewer donations for, say, the families of the victims of the bombing of the USS Cole. Wasn’t it basically the same premise? Weren’t the USS Cole lives just as valued?)

So my suggestion to you: If you feel your money would be better spent on a more prevalent disease, please, donate all you can. No disease is a good disease. On the other hand, if you know someone who suffers from any rare disease, maybe consider donating to an organization like the Global Genes Project. Or better yet, go ahead and pick your own. If you decide on the ALS Association, just know that you really don’t need to be “nominated” to be able to donate.

Off my soap box now.