EDITOR'S DESK: A closer look at the ALS ice bucket challenge

It seems like everyone is taking the ALS ice bucket challenge.

Video clips of friends, family, scientists, professional athletes, musicians, actors and others taking a bucket of ice-cold water over the head fill our social media feeds.

People in these clips are supporting research for amyotrophic lateral sclerosis, also called Lou Gehrig’s disease, a neurodegenerative condition that is crippling and often terminal, according to the ALS Association, a nonprofit organization.

Here is how it works: Someone calls out three people’s names on social media. Those people can accept the ALS ice bucket challenge — by donating any amount to ALSA, recording a video of the challenge and calling out three other people — or they can donate $100 to ALSA, which supports global research and lobbying.

The ice bucket challenge is a social media phenomenon, raising $94.3 million since July 29, according to ALSA’s website.

Donations will help fund research and clinical trials in the ongoing fight against the disease. The goal is to supplement the organization’s milestones, which include discovering a genetic abnormality that causes ALS, and linking certain genes with inherited ALS cases.

ALSA’s mission and past findings are promising to approximately 5,600 people annually diagnosed with the disease, according to the organization’s website.

However, when it comes to the ice bucket challenge, it is important to look past the trend and explore this fundraiser further.

PHILANTHROPY, SOCIAL MEDIA STYLE

Last week, while thinking aloud, I asked a coworker whether he thought the News Bulletin should have an ice bucket challenge.

After all, it is for a good cause, it is  social media’s latest craze — everyone with a Facebook or Twitter account and a digital camera seems to be doing it — and, well, it might be fun.

Later that day, I realized I wouldn’t have asked the question if not for the ubiquitous ice bucket challenge videos.

Then I wondered: Should charity be a challenge?

On Friday, United Way of Okaloosa and Walton Counties representatives presented a short video to our staff and provided forms for opting in or out of payroll deductions to support the nonprofit and its partner agencies.

It allowed us to learn more about Shelter House, which supports domestic violence survivors and their children; the American Red Cross of Northwest Florida; Ronald McDonald House of Northwest Florida; and other organizations that do good work in our area.

The video inspired this busy news editor, who learned he could help far more people than he could imagine, in some small way, despite very limited boundaries of time and space.

Moreover, I appreciated that the form submission process was private — no pressure.

Conversely, ice bucket challenges — philanthropy, social media style — unnecessarily pressure people to do two things: create a viral video to spread the message of an organization they may or may not support or give $100 they may not have.

Meanwhile, the whole message of the cause could be lost in the process.

Comedian Kathy Griffin made headlines when she did the ice bucket challenge naked. YouTube user Ian Stuart “one upped” friends by taking the “ice bong challenge.” (You can imagine how that turned out.) Chemist Muhammad Qureshi took the “ALS Liquid Nitrogen” challenge, a painful-to-watch twist.

I don’t question these users’ support for the cause, but do question the point of turning up the shock factor. At some point, the headlines become more about the person doing the challenge and less about the nonprofit they’re supporting.  

Because of this, I wonder how many people actually know what ALS is; most people in these videos don't describe the disease; the viral clips are largely about the spectacle of being doused.

A FAITH MATTER

No one disputes the goal of helping people with ALS, but after the ice bucket challenge went viral, news organizations started reporting on where ALSA’s money goes.

The results gave some people pause.

The nonprofit’s researchers study the disease process, environmental factors and genetics, according to ALSA’s website. The work involves the use of stem cells; most come from skin cells, but ALSA sometimes uses fertilized embryos less than a week old. 

Though ALSA representatives have said donors can restrict their gifts, embryonic stem cell research concerns a number of Christians who don’t believe in using fertilized eggs as a means to an end, and who don't want to support an organization that offers the option.

Some people get around this inconvenient truth by taking the ice bucket challenge and donating money to the John Paul II Medical Research Institute in Iowa City, Iowa. The institute supports ALS research without using embryonic stem cells, according to its website.

Knowing the concerns, and that there are alternative organizations with similar aims, doesn’t the ALS ice bucket challenge seem more complicated than it did before?

WHICH CAUSE IS GREATER?

Another concern is the simple fact that residents' disposable income, if they have any, is limited, so should social media trends with significant celebrity endorsement be the first and only choice? Or should we research the issues first?

Vox Media recently released a chart that shows the causes we donate to aren't necessarily the ones with the highest mortality rates.

For instance, people annually donate $22.9 million to motor neuron diseases including ALS, which has 6,849 annual deaths, according to the chart. Meanwhile, causes like suicide prevention, diabetes, chronic obstructive pulmonary disease and HIV/AIDS receive just $3.2 million, $4.2 million, $7 million and $14 million while claiming 39,518, 73,831, 142,942 and 7,683 lives, respectively.

Of course, this isn't to say we shouldn't donate to ALSA or other organizations that support ALS research, but it does put the issue into perspective.

Social media is a game changer. It changes how we communicate, how we date and even how we donate to worthy causes.

But before you support the next fad, it's worth looking a little closer at the issue.

What's your view? Email tboni@crestviewbulletin.com or tweet @cnbeditor.

This article originally appeared on Crestview News Bulletin: EDITOR'S DESK: A closer look at the ALS ice bucket challenge