Originally published August 27, 2014
How’s that for a pithy title about the wildly successful ALS Ice Bucket Challenge?
“Fun.” Now, the hard part begins: Organizing scattered thoughts — from a ridiculous amount of research (my process) — into a post that’s entertaining and educational for everyone. AND, (because raising the stakes makes it even more exciting) I’ll do it in less than 750 words! Woo-hoo!!! 😉
I first heard about the Ice Bucket Challenge for ALS (amyotrophic lateral sclerosis, often referred to as “Lou Gehrig’s Disease”) on August 16, in a casual conversation. I knew about ALS, but I didn’t give the viral video craze much thought until I opened my Facebook page the very next day — freaky! — and saw I was one of three people issued the challenge by my cousin. Fun? I thought so! An opportunity to ham it up? Why not?! Support a good cause? You betcha!!
All in, I was dumped on by a “much too” enthusiastic husband and videoed by a like-minded neighbor kid. Then, I downloaded my challenge to three favorite peeps on August 18 — within the 24-hour deadline. Not wanting to be accused of slacktivism, we’ve also donated to the ALS Association. (We were going to anyway … I just wanted a reason to use “slacktivism,” a new word for me.)
I’ve learned a lot more than a new word since “jumping off a bridge,” as one Boston Globe columnist likened this latest dare to the masses. High atop his horse, he lectures us: “You would think the merits of something — eradicating a disease, educating the impoverished, or cleaning up the environment — would be enough to move people to be altruistic. But that’s rarely the case. … We’ve seen a proliferation of runs, walks, and rides — the Walk for Hunger, the Jingle Bell Run (for arthritis), or the Pan-Mass Challenge (cancer). Mass perambulation is largely unconnected to any of these causes … (also) Charities have always been comfortable using guilt as a motivator — children and puppies in danger seem to work especially well. But the (Ice Bucket) challenge crosses a line. Those issuing challenges are not only telling others what cause to support but also saying that if they don’t, they must suffer a penalty. Threats to compel giving? It seems the opposite of what it really means to be charitable.”
Oh yeah? Well, here’s what “I” have to say about that, Mr. Boston Globe …
That felt good, didn’t it? 😉
OK, let’s get back to business … Here’s the more important stuff I’ve learned:
- Based on the most recent press release from the ALS Association, there’s a very good chance the amount of money raised by the Ice Bucket Challenge could top $95 million … compared to $2.7 million raised during the same time period last year (July 29 to August 27).
- More money equals a greater number of scientists involved in multiple research methods , thus a greater chance to lengthen the life of those diagnosed with ALS (three to five years for 50 percent of patients). Additionally, the funds support the ALSA nationwide network of certified medical facilities, a benefit to patients and their families.
It’s estimated that 30,000 people live with ALS in a given year. This is, literally, a drop in the bucket (excuse the pun) compared to Alzheimer’s numbers: over 5 million annually. Amyotrophic lateral sclerosis is an “orphan disease,” meaning it’s rare and affects a small number of people; for that reason, there’s little commercial interest in funding research and developing new products to diagnose or treat it. If having silly fun on social media — by celebrities, politicians, high-profile business executives, and the common masses — can raise nearly $95 million in less than a month and bring hope to those 30,000 and the people who love them, what’s wrong with that kind of altruism? Aside from occasional embarrassment? Nuthin’.
* Stock photos
WORD COUNT OVER! Before this note … 747! Including captions! Bam!!!
** On a more serious note, it’s always important to remember “safety first,” no matter what kind of activity we’re involved in. There have been a couple of deaths linked to the Ice Bucket Challenge, as well as the death of Corey Griffin, who earlier this month raised $100,000 in honor of his friend Pete Frates. Frates’ story has been credited with launching the Ice Bucket Challenge. (Frates’ inspiring video is part of Griffin’s article.)
Finally (and yes, I know I’ve “cheated” regarding word-count), I believe people are entitled to have different opinions. Click here to read those from religious leaders opposing embryonic stem cell research, to the House of Representatives’ website rules, to Pamela Anderson’s stand for PETA.