Where Credit is Due

As you may remember, last year I wrote two blog posts about tScreenshot 2015-09-04 10.25.35he ALS Ice Bucket Challenge. (One Two)

In those posts, I questioned the campaign, wondering if it was going to be more about the means than the ends. That is, in the final tally, was it really more about social media and ice water than it was about making a difference in ALS research?

In my defense, I believe it’s entirely appropriate to ask the question. After all, there has been no shortage of organizations exploiting both the bad luck and the goodwill of people in order to line their own pockets.

I didn’t ACCUSE the creators of this campaign of exploitation, only wondered if anyone asked the tough questions.

I callz ’em like I seez em.


I have to follow-up with heartening news.

I WAS (maybe, kinda, a little bit) WRONG. From the Washington Post:

[O]ne year and more than $220 million in donations later, scientists at Johns Hopkins are claiming a major breakthrough in ALS research and are partly crediting the success to the massive influx of public interest.

“Without it, we wouldn’t have been able to come out with the studies as quickly as we did,” said Philip Wong, a professor at Johns Hopkins who led the research team. “The funding from the ice bucket is just a component of the whole — in part, it facilitated our effort.”

Wong and his team have been studying ALS for about a decade, but as Jonathan Ling, another researcher at Johns Hopkins, said in an “Ask Me Anything” thread on Reddit, the millions of dollars brought into the field has given researchers the financial stability to pursue “high risk, high reward” experiments.

“The money came at a critical time when we needed it,” Wong said.

The discovery revolves around a specific protein in the brain.

Now, because you head out for some celebratory debauchery in the street, my cautious self has another word to the wise. There is a long way to go before this “breakthrough” will benefit humans. As I once heard Susan Love say, we’ve cured breast cancer in lots of mice. That doesn’t necessarily translate into human cures because humans aren’t mice.

However, this is big news, and it makes my cold, dead heart a little less icy to know that something fun can actually yield serious results.

3 thoughts on “Where Credit is Due”

  1. Problem is that as we continue to consumer more than income, savings are disappearing. Which means capital for investing in projects like eradicating disease is disappearing. Wind in face of major innovation.

  2. I wrote about the ALS challenge last summer too… I was wary — and concerned because people were dumping water on their heads under the umbrella of “awareness” without donating money. I thought the donation should be *tied* to the dumping of water. I wan’t to see people get iced and then say “I just donated $ to ALS) rather than just go through the act of being silly for Facebook. However, I was thrilled to read that ALS raised SO much money for research. It turned out to be a win-win. yet still, I am cautious. With Pinktober on the horizon, I stand firm in telling folks to not mistake purchasing pink beauty products (or whatever pink thing is being peddled) as anything more than padding the bottom line of the company selling that product first and foremost. When companies donate a percentage of profit to “research” they are first selling more product. THEN they may (or may not, read the fine print) donate some $$ to a breast cancer charity… but how much of what *that* charity receives will go towards research? If people do their homework and the math, they will see how very little their pink purchase matters in the lives of those affected by breast cancer.

    Thank you for bringing up the ALS ice challenge again — it provided me with the fire to rant about Pinktober.

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