From ALS Bites

#ALSIceBucketChallenge


Link to YouTube videoThree days ago I joined tens of thousands (at least) and posted a video of myself being doused with a bucket of ice water in an effort to spread awareness of ALS and, more importantly, in an effort to raise funds for ALS research.

This “hashtag activism” viral fundraising campaign–one I have called a “seemingly ridiculous Internet meme”–is now, according to the New York Times and others, the most successful ever. The most recent estimates I find say that the ALS Association (ALSA) alone has raised at least $11.6 million as a direct result of this campaign. Other ALS-related organizations around the world, including the organization I chose to support through my efforts, the ALS Therapy Development Institute (ALS TDI), are also seeing spikes in donations.

Predictably, a backlash has already begun. Critics have called the campaign an example of “slacktivism” and point to the fact that dumping a bucket of ice over one’s head is, according to the original challenge, done to avoid donating $100 towards ALS research. This is true. In the most common formulation of the rules a participant is required within 24 hours of receiving a challenge to:

  • Post a video of him or herself being doused by a bucket of ice water while making an appeal for donations, OR
  • Make a donation of $100 to an ALS research organization, AND
  • After meeting the challenge, the participant can nominate three additional people or groups

Facebook postSome videos do mention ALS only in passing and do not make any direct appeal for donations. But many participants including me take the ice and make a donation. In any case, the attention itself is a good thing and money is coming in. For years the ALSA has run expensive public awareness campaigns that have not generated anywhere near the buzz of this “seemingly ridiculous Internet meme.” Recently Steve Gleason (TeamGleason.org) and others have done a great job garnering publicity. Super Bowl PSA’s and Major League Baseball’s annual salutes to Lou Gehrig have moved the needle some. Still, this Internet wildfire has put ALS into the consciousness of millions of people around the world to an unprecedented extent.

Only time will tell what the impact of all of this will be. Will it lead to a cure? There is a lot of work left to do and it will take more than this to get it done, but this event gives us reason to be hopeful.

On Facebook I promised to donate $50 to the ALS TDI for every video posted in response to mine and to match donations made as a result. (My Facebook post is made public and you can click here or on the image above right to view it.) I capped my “matching” contribution at $500 and this morning I made that donation. I know that my appeal has raised well in excess of $1000 so far for ALS research at an outstanding private institution and the only laboratory in the world working exclusively on a cure for this disease.

Link to YouTube video

I will not be participating in the “ALS Walk for a Cure” this year.[1] This is the only time I will solicit donations. If you would like to support research efforts, I can give my highest recommendation to ALS TDI.[2] Find them on the web at www.ALS.net. To the good friends of mine who have already donated and/or met the challenge, thank you very much!

You can watch my dousing here:

Recent ALS Bites:
DATE TITLE
05/12/2017 The Eyes Have It
08/04/2016 YFALS National Corntoss Challenge
07/18/2016 Scopolamine Blues
03/06/2016 Dragon Me Down
02/12/2016 Five Years In

   or see the  Complete ALS Bites

Notes

  1. If you are in California and would enjoy participating in one of these walks, consider joining my aunt Christine’s “Bachwalkers West Coast” team at the Redding, California event in October. Send me “Feedbach” if you need her contact information. [^]
  2. The popular non-profit watchdog site CharityNavigator.org gives its highest ratings to ALS TDI. [^]