ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Thursday, September 25, 2014

Gone In Sixty Seconds

On Sunday, August 31, I posted the following in the comments area of the ALS Association facebook page:

Some folks who participate supportively on an ALS message board started a petition a few days ago to ask that the ALSA IBC windfall be substantially directed to research.  They asked me to post the petition here.  It now has over 1000 signatures that include PALS, CALS, families, friends, donors. The message is simple. Thank you for listening.
https://www.change.org/p/urge-als-association-to-dedicate-at-least-75-of-its-ice-bucket-challenge-donations-to-research


Within minutes (literally) it was deleted and I was blocked from commenting or liking anything there again.

Also deleted in the Sunday-night purge was one other posting that I had made days earlier  suggesting that an infographic showing what happens to a hundred dollar walk donation and what happens to a hundred dollar national donation would be most helpful.

ALSA certainly has every right and responsibility to manage its facebook area as it thinks best.

I still believe that both comments are worth some thought and archive them here.


2 comments:

  1. That's odd, same happened to me when I commented on an embezzlement arrest that took place a few years back.

    ReplyDelete
  2. A gofundme scammer post has stayed on ALSA fb page for over 20 hours. I hope that someone there might see this and take it down.

    ReplyDelete