From ALS Bites

Thanks 100 Million!


ALSA announcementAccording to an ALSA press release dated August 26, the organization has raised $94.3 million from the ALS Ice Bucket Challenge in less than a month. But the ALSA is not the only organization reaping the benefits of this one-time-only phenomenon. I was told two days ago by Terri Handler that my favorite ALS charity, the ALS Therapy Development Institute, is approaching $4 million in Ice Bucket donations. Other worthy US-based charities such as The ALS Project and Les Turner ALS Foundation have benefited. And this viral campaign is not limited to the United States. Stephen Hawking posted a video of his family under the bucket with an appeal for donations to the UK-based Motor Neurone Disease Association. German Prime Minister Angela Merkel has been iced. This is a world-wide out-of control spontaneous combustion, and it is safe to say that it has has raised well in excess of $100 million for ALS research and treatment.

Friends and family responded enthusiastically to my own challenge. I have collected still shots from every one of the 32 Ice Bucket Challenges done in my honor (those responding to my challenge and those who mentioned me and/or tagged me on Facebook). Many of those who took the cold shower donated, and I know of several who avoided the ice but quietly made generous donations. One hundred million grateful thank yous to each one of you![1]

Slideshow image

Click on the image above to see a 32-photo slideshow featuring my “bucket brigade.” (This slideshow format requires that you click somewhere on the right half of a photo to move to the next one. These photos vary widely in their size, so is trickier than most to negotiate. Any click outside of a photograph exits the series.)

If you only watch one more ALS Ice Bucket Challenge video, let it be this one. It is three minutes long and features John Anderson of Fairfax, Virginia. He was diagnosed with ALS in January 2011 (one month before my own diagnosis).




By the way, the musician Matthew Ryan has cut a single of a song he wrote in honor of John Anderson. Click below to hear “An Anthem for the Broken” and click the link for a chance to buy a copy of it to benefit John and his wife Amanda.[2]


 

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. Predictably, there have been naysayers who point out that there are lots of charitable causes as deserving as ALS. This is true, of course. But this is the first time since Lou Gehrig’s diagnosis more than 75 years ago that ALS has been thrust into the public consciousness to this extent. There is a lot of potential for good here, and it is tiresome to read some of the criticism and negativity.
     
    One potentially harmful meme has reared its head. The ALSA has been criticized as a poor steward of the money entrusted to it. Some of this criticism has been leveled by members of the ALS community. Some of the most passionate and effective advocates in the ALS community–people I respect very much–feel this way. While it is true that the ALSA is not perfect, my belief is that much of the criticism is undeserved. The ALSA is rated highly by such watchdog groups as CharityNavigator.org.
     
    Nevertheless, the criticism is out there. Even Snopes.com (“Ice Doubt”) has weighed in on this issue.
     
    Though I chose to support a very fine ALS research organization (www.ALS.net) through my efforts, I do believe the ALSA is working for us and I have reached out to the ALSA to strongly encourage them to dedicate the money from this windfall to funding research in the most responsible way possible. I will continue to follow their performance and will be in contact with them regularly. [^]
  2. Please note that John Anderson did not use his video in any way to solicit personal donations. I am the one who has chosen to include a link here to the site of a musician who is fundraising on John’s behalf. [^]