Sep 022014

The ALS ice bucket challenge has dominated social media for the last few weeks and has raised tens of millions of dollars for ALS research. Countless more people have now at least heard of ALS and have a basic understanding of the disease’s effects on those who have it. This is all good news, right?

Maybe. Slate points out that the ALS Association is no closer to finding a treatment or cure after decades of research and it’s unlikely that a sudden influx of money will change that. And while ALS is a potentially fatal disease, it affects relatively few people. Does it make sense to throw $100 million (according to some estimates) at a single and rare medical condition? Would that $100 million have otherwise been spent on other charities that are more likely to achieve immediate results with the money (like feeding the hungry or developing new sources of clean water for poor communities)?

I won’t be giving money to the ALS Association. To be clear, I also don’t give money to charities related to spinal muscular atrophy (my disability). Medical research is a decades-long process that isn’t going to yield results any faster because of my $100 dollar contribution. I certainly don’t begrudge the ALS Association for its sudden windfall and I hope it puts the money to good use, but there must be a better way to fund and coordinate research in “orphan” genetic diseases that otherwise attract little attention from the private sector. It would be great if the ice bucket challenge kicked off a more thoughtful conversation about that very topic. Unfortunately, thoughtful debate isn’t a strength of social media. What’s more likely is that donations to the ALS Association will fall off a cliff before long and the long-term benefits of the ice bucket challenge will be ambiguous at best.

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