Rekha Basu: Trendiness aside, ice bucket challenge is a triumph in the battle against ALS

08/28/2014 4:52 PM

08/28/2014 5:44 PM

My son explained the gig this way: People are dumping buckets of ice water over themselves, filming it and posting the videos online. Then they tag three others, who have 24 hours to do the same or pay up. They’re doing this in the name of ALS.

I wasn’t tracking. What do ice water and selfies have to do with ALS?

Are participants doing penance for something? How would throwing water on yourself, or watching someone else get doused, help fight a deadly disease?

I was overthinking it. There’s nothing, necessarily, to connect each of those pieces to Lou Gehrig’s disease, the informal name of amyotrophic lateral sclerosis. It’s a hideous motor-neuron illness for which there is no cure and which, as recently as 10 years ago, few people seemed to know about. This is just an offbeat fundraiser that caught fire and probably will have raised at least $90 million for the ALS Association by the time you read this. It speaks to both the goofiness and ingenuity of people in the age of social media.

Instead of getting soaked, people can choose to pay $100 to the association. Those who do get drenched are still expected to give at least $10 and challenge others to do the same.

About 30,000 people in the United States are believed to have ALS, which attacks nerve cells in the brain, robbing a body’s ability to walk, talk, swallow and ultimately breathe, while leaving the mind intact. It steals dignity along with the ability to physically participate in the world.

My sons lost their father and I lost my husband and best friend to it. Without even knowing what causes it, the world keeps losing more wives, husbands, parents, children, aunts, uncles, grandparents and friends that way. ALS also drains budgets because of the extensive care needs and adaptations necessary to function before death, which comes typically within two to five years. Iowa resident Leslie Nolte lost her mother to ALS and said her family spent $375,000 out of pocket on her care first. They needed a full-time, live-in nurse for four years, and then a long-term care facility.

It’s tough enough to talk or think about the illness, much less with any kind of levity or positive angle. So when people ask, sometimes skeptically, what I think of the ice bucket challenge, I tell them I’m grateful for something that gives people permission to have fun while raising awareness and money for a cure. Each time I hear that anyone, from a politician to high-school student, college president or TV personality from Italy to Washington, D.C., took the challenge, it’s a hopeful sign that more people are finding out, and caring, about ALS.

It has been difficult to develop a lobby group of ALS patients because they live such a short time and get so disabled, usually very quickly. So it’s up to others to call attention to the disease, which is on the increase throughout the Western world, especially among women and younger people.

The ice bucket challenge has been doing that. Yet the fundraiser has a frustrating array of detractors, complaining about everything from wasted water to animal-based research to embryonic stem-cell research. The Catholic Church’s American Life League is asking members not to take part in the challenge because, though an ALS Association spokeswoman says the research is primarily on adult stem cells, the association is doing one privately funded study using embryonic stem cells.

On top of all that, some people worry that private donations would be expected to take the place of National Institutes of Health funding since the House of Representatives has cut the agency’s budget. Others criticize challenge participants for being “slacktivists” rather than activists and educators.

These attacks are unwarranted and disheartening. Those embryos would not be carried to term anyway; they would be destroyed. Here they could be used to save lives. The ALS Association asks people in drought-stricken areas not to do the challenge, or to re-use the water somehow. And if people on social media like to live out loud and publicly, and use it to network for a good cause, more power to them.

There are many ways to raise money and awareness of ALS. For those who prefer an old fashioned approach, chapters of the ALS Association hold annual walks to defeat ALS. Or you could dump cold water on your head. Just don’t dump it on someone else’s enthusiasm for a different approach.

Rekha Basu is a columnist for The Des Moines Register. Reach her at rbasu@dmreg.com.

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