Ice bucket challenge more than a social media phenomenon

It seemed like fun. A good post to Facebook and Twitter. Another way to connect with friends.

But last year's ice bucket challenge turned out to be more than just the latest viral social media trend.


Roughly 15 million people dumped gallons of ice water over their heads in what ended up being a brilliant fundraising coup for ALS research.

The campaign raised $115 million for the ALS Association and $700,000 for the local affiliate — far more than any typical fundraiser for the organization. (The association raised just $2.8 million in the entire previous year.) That new money in turn funded new research, including at the Johns Hopkins School of Medicine, where two scientists have discovered more about a protein linked to amyotrophic lateral sclerosis, a rare neurological illness better known as Lou Gehrig's disease.


The challenge was such a success that the ALS Association launched a second round this summer with the tag line "This August … and every August, until there is a cure."

Yet last August, as celebrities like Oprah Winfrey, Justin Timberlake, Lebron James, Adam Jones and Martha Stewart posted photos of their drenched selves, critics decried the challenge as a social media campaign with no substance. They doubted it would contribute to a cure for ALS.

That notion was quickly debunked as donations poured in to the association and its affiliates.

Johns Hopkins researchers Jonathan Ling and Philip Wong said their research might not have been completed without the funding.

"The ALS bucket challenge got everyone's attention. It came at a time when we needed more money to finish the research," Ling said. "Without it, I don't think our results would have come out anytime soon, not for a couple of years."

The scientists used the funding to look at a protein known as TDP-43, which researchers have long known clumps up and moves outside the nucleus of the brain cells and nerve cells of people with ALS.

What wasn't known — and what the researchers figured out — was the role TDP-43 plays.

If the nucleus acts as an instruction manual for the cells, the TDP-43 protein serves as a kind of editor that prevents random pages or gibberish from being inserted into the instruction book, Ling said. This doesn't happen when TDP-43 clumps up and exits the cells, contributing to their death and likely to the disease.

While the research was done in mice and is still preliminary, the authors say it's an important advancement in the search for a treatment for the nearly 30,000 Americans affected by the neurological degenerative disorder. The disease is ultimately fatal, killing about 7,000 Americans each year.

The money from the ice bucket challenge also funded other research and services for those living with the disease, including patient care coordinators who make home visits, help people with transportation and direct them to clinical trials, said Tanyelle Gill, marketing and communications manager for the DC/MD/VA chapter of the ALS Association.

The grass-roots campaign, started by two patients with ALS, drew more support than the organization could have ever predicted, Gill said.

"Once people caught on, it really spread like wildfire," she said.


On the organization's side was the fast-moving nature of social media and the "selfie" phenomena, where everyone is looking for the craziest or most unusual way to present themselves to the Internet world, said Marie Yeh, an assistant professor of marketing at Loyola University Maryland's Sellinger School of Business and Management.

The campaign called for participants to challenge their friends and family, adding a peer-pressure element. It also benefited from celebrity participation.

Time will tell if the campaign can be repeated successfully this year. In its second year, it may lose some of its novelty. The ubiquitous postings that dominated social media last August are missing.

"What they run the risk of now is wear-out," Yeh said. "People are going to be like, 'Uh, this again.'"

On the other hand, the challenge has name recognition, and more attention has been brought to the disease than ever before, she said.

Gill said the local chapter has gotten good response from corporate sponsors who have participated, or plan to participate, in the challenge, including the Baltimore Orioles, Washington Nationals, Golden & Cohen LLC, R2integrated and the Bowie Baysox.

Last year, the big surge in participation came in the final two weeks of the campaign, Gill said.

Booz Allen Hamilton first became involved in ALS research in the 1980s when one of its employees developed and later died of the disease, said Robert Silverman, a senior vice president in the consulting firm's civil and commercial business.

The ice bucket challenge brought a new level of enthusiasm to the association's fundraising efforts, said Silverman, who heads the fundraising committee of the local ALS Association

"I don't know if we can raise the same amount as last year," he said. "Hopefully we can come close. It is hard to beat a phenomena like that."

Even if it doesn't beat last year's goals, there is still a benefit, he said.

"You can never call too much attention to an important cause like this," Silverman said.


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