The Ice Bucket Challenge has perhaps reached the peak of its 15 minutes of fame but its presence on social media continues to spread. On the face of it, the concept of pouring a bucket of ice water on your head is ridiculous but I implore you to dig deeper if you have not done so already.
“The viral fundraising is nothing but positive,” said Tony Heyl, Director, Communications and Public Policy at the Greater Philadelphia Chapter of the ALS Association. “It has brought over 100,000 new donors nationally. It has also helped spark a national conversation about Lou Gehrig’s Disease, how serious it is, and why we need more research.”
Amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, is a neurodegenerative disease that causes muscles to atrophy and those who suffer from it lose control of voluntary movement. The average lifespan of a person diagnosed with ALS is roughly three years from the onset of the disease.
Next to Lou Gehrig, Steven Hawking is likely the most notable person to suffer from the disease. His case is the exception to the rule, as he has lived with the disease for over half of a century. Gehrig and most others are nowhere near as fortunate.
“It has been 75 years since Lou Gehrig left baseball, yet the disease that took his life and name has not been cured,” said Heyl. “The Ice Bucket Challenge is a great step forward, but after the ice melts, we need to keep up the awareness and fundraising until we’ve ended ALS for good.”
The Ice Bucket Challenge is doing what it can to help end ALS by making a big impact with only a little footprint.
“From July 29 to August 13, the national office of The ALS Association has received $3.6 million compared with $28K in donations during the same time period last year,” continued Heyl. “If we look at donations Association-wide (which includes national and chapter revenue), our organization has received $5.7 million compared to $1.2 million during the same time period last year.”
The donation numbers are staggering and one can only hope that Pete Frates and Steve Gleason, former athletes who suffer from ALS and helped to popularize the cause feel some semblance of satisfaction.
“That it was started by a person with ALS proves that it is important to listen to the ideas of all people in this cause,” Heyl said. “People with ALS may not be able to walk or speak, but they are still incredible human beings who can accomplish a lot.”
The concept of dumping water on your head as part of an effort to raise awareness — and money — for a cause does not sit well with everyone, though.
Pete Nocito, a Chicago school teacher who actively participates in numerous fundraising causes, was nominated to participate in the challenge. In response, he posted a short video of himself in which he simply responded, “No.”
When asked what he disliked about this, he reminded me of why I dropped out of the Movember campaign last winter.
“You said something like ‘I feel like Movember has raised more awareness that I have a mustache than it has about prostate cancer’,” he said. “That’s exactly how I feel about this challenge.’
“The other aspect of this is the peer pressure/call-out/triple-dog-dare-you method of fund raising. If you don’t douse yourself in water and you don’t donate, you’re a jerk. It’s implied regardless of however many folks doused and donated.”
A participant in the challenge, Hal Greenblatt, was asked if he felt shamed into doing this.
“No public shame,” said Greenblatt. “I knew amongst my group of friends that I would be called out eventually. My friend who challenged me was my college roommate and his father passed away from ALS. My great uncle also passed from ALS, so this was a cause that had a special meaning to me.
“I was hopeful that I would have started a trend with both the ice bucket and a donation. So far, my people I’ve challenged have followed through.”
Nocito is a selfless individual who moved to South Dakota where he volunteered as a middle school teacher at the school through the Red Cloud Volunteers program after college. He eventually came around on many of the aspects of the challenge and even donated to Team Gleason.
“I think that any method of fundraising that does any good for the organization is ultimately worth it,” said Nocito. “As long as the cause benefits from it, it shouldn’t make a difference how I feel about it. If the cast of the Today Show wants to dump water on their heads for ALS, good for them. If Matt Lauer and Al Roker want to wax each other’s backs for spinal injuries, they can knock themselves out.”
President Obama seemed to side with Nocito on this issue. He rejected the challenge and broke out his checkbook.
Jesse Tyler Ferguson, of Modern Family fame, pulled a bait and switch move when he was challenged.
If you would like to donate to the ALS Association, you can do so here. You can also participate in the Walk to Defeat ALS in your local area. Or, if you’re anything like my kids, you can nominate the cat and dump water on his head.
You can also donate to my Walk to Defeat ALS team here.