Ice Bucket Challenge raises research funds

The Amyotrophic Lateral Sclerosis (ALS) Association recently reported that donations have reached $115 million compared to the $3.5 million they raised around the same time last year. They attribute the significant rise in funds and awareness to a popular online trend called the “Ice Bucket Challenge,” which went viral over social media this past summer.

Although the Ice Bucket Challenge benefitted the ALS Association, it was initiated by ALS patient Pete Frates, who was diagnosed with what is also known as Lou Gehrig’s disease in 2012 and as a result, can no longer speak or walk. Since then, Frates has inspired well-known figures, including Bill Gates, Taylor Swift and Lebron James, to take the challenge as well as over three million global participants.

Under the hashtag #ALSIceBucketChallenge, participants made viral videos of themselves pouring a bucket of ice water over their heads and posted it on social media. They then challenged their friends to do the same within 24 hours and to donate money for ALS research.

Although the challenge has already reached its pinnacle on Aug. 20 when the ALS Association received the most internet traffic and donations, it has yet to come to a definitive ending, according to Julie Sharpe, Executive Director of the ALS Association of the Greater Chicago Chapter.

“Since this was not a campaign that was initiated by the association, it’s truly viral,” Sharpe said. “It will go on as long as people continue to take the challenge.”

As videos of people taking the Ice Bucket Challenge become less frequent over social media while news of its success spreads, the impact of the challenge among the ALS and global community is expressed in a letter of gratitude from the ALS Association. The aftermath of such a viral campaign might leave some wondering: what happens from here?

Most of the donations from the Ice Bucket Challenge will be put towards treatment and research of ALS which, according to alsa.org, is a neurodegenerative disease that can lead to long term effects such as muscle paralysis or death. ALS patients survive an average of two to five years after diagnosis. Therefore, the association is focused on finding successful treatments for the disease as well as providing for patients and advocating.

“Generally for research, we have a plan to invest a lot of activity around finding interesting treatment options, and we’ll work with certain industries to move the field of biomarketing forward,” said Lucie Bruijn, Chief Scientist for the ALS Association, PhD, MBA. “There are many areas that we’re going to be actively engaged in.”

The ALS Association recently announced that it will be awarding $3.5 million dollars in research grants to scientists in the U.S., U.K., France, Canada, Switzerland, Israel and Australia as part of their global initiative. Simultaneously, a committee is determining how the Ice Bucket Challenge donations will be allocated towards research, patients and awareness projects.

“[ALS] is a very challenging disease; in terms of treatment, there’s probably not one treatment that will be sufficient,” Bruijn said. “It’s really working out the combination of treatments that will work. Maybe some people respond to the treatment and others don’t, so there are lots of areas that are very difficult because of the nature of the disease.”

Bruijn acknowledged that the donations from the Ice Bucket Challenge will impact biomarker research as well as other projects since the association now has sufficient funding for new projects and programs.

Apart from having direct effect on ALS research and patients, the Ice Bucket Challenge has also inspired the global community to take action—whether it’s by donating money, spreading awareness or employing the benefits of social media to other causes.

The Stevenson chapter of National Honor Society (NHS) has done a spin-off of the Ice Bucket Challenge with its own Mountain Dew It Challenge for its annual Spirit Fest. Daniel Ko ’15, NHS president, reported that around 20 people have participated in the spoof in honor of the Lexi Kazian Foundation.

“Not a lot of people have the ability to donate large sums of money, and I’m sure there are many who do [want to donate],” Ko said. “However, because that message gets spread around to all these different places over Facebook and people get nominated, I feel like [the Ice Bucket Challenge] did raise a lot of money and awareness for ALS.”

The idea to have people in the Stevenson community pour Mountain Dew over their heads instead of ice water was started by NHS sponsor Brett Erdmann.

Also a participant of the Ice Bucket Challenge, Erdmann thought the idea differed from traditional ways of raising awareness which were becoming less effective.

“The unique thing about [the Ice Bucket Challenge and the Dew It Challenge] is you’re actually challenging somebody; it’s more personal,” Erdmann said. “If you’re issued a challenge, you have to make a choice. Then, there’s a commitment there, and you challenge other people. It’s a domino effect.”

The Ice Bucket Challenge was an event that encompassed both the domino effect and the advantages of using social media.

No one had predicted the success these two components could bring to the ALS community, Sharpe said.

“Every 90 minutes someone’s diagnosed; every 90 minutes someone loses their battle,” Sharpe said. “So, when people are diagnosed or when their families first come in contact with the disease, they ask ‘Why don’t people know about this disease? Why aren’t people talking about this disease?’ With the Ice Bucket Challenge, we are the national dialogue; it’s insurmountable.”