In a grainy video posted on Facebook, Jillian St. Louis and Danna Vaughn, two employees of Ken’s Place Seafood Restaurant in Scarborough, shiver and gasp as they drench themselves with a bucket of ice water and dare their co-workers to do the same, vowing to donate 25 cents to ALS research for each “like.”
“I thought I was going to be able to avoid it,” said Jen Skinsacos, a bar manager at Ken’s Place and St. Louis’ sister. “And then they called out the entire crew and posted the video on Facebook.”
St. Louis and Vaughn are among the latest to join a social media campaign that has gone viral, bringing in celebrities such as Martha Stewart, Justin Timberlake, Matt Lauer and other notables who get soaked on video for a good cause. The videos are aimed at raising awareness and funds to fight amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, a fatal nerve cell disease in the brain and spinal cord that controls voluntary muscle movement.
Participation in what’s called the “ALS ice bucket challenge” is easy: Those nominated have 24 hours to pour a bucket filled with ice and cold water over their head on camera, donate money to support a charity of their choice – usually ALS, post the video to social media sites, and challenge three other people to do the same.
The videos started popping up two weeks ago, with the campaign credited to Peter Frates, a 29-year-old former Boston College baseball captain who was diagnosed with ALS in 2012. The neurodegenerative disease has no cure and affects about 12,200 people in the United States, according to a Centers for Disease Control and Prevention registry.
A PHILANTHROPIC PHENOMENON
In Maine, St. Louis and Vaughn’s video has garnered more than 1,320 likes on Facebook and prompted the women to donate more than $300 to ALS research.
The reaction from the restaurant’s more than 6,200 Facebook followers inspired the rest of the staff to participate in the challenge, including Skinsacos, who donated $64 in honor of Marion McMahon, the grandmother of a Ken’s Place employee who died of ALS two years ago.
“The owner – Dave Wilcox – is one of the most philanthropic people,” Skinsacos said, adding that Wilcox donated $500 to the cause in memory of John Conseison.
“All of us were really happy and proud to have helped,” Skinsacos said.
A video of U.S. Sen. Susan Collins, R-Maine, having water poured over her own head also has more than 1,300 likes on Facebook. Collins co-sponsored the ALS Registry Act that established the national registry in 2008.
“This challenge is drawing our nation’s attention to the devastating disease of ALS and to the cause of better treatments and ultimately a cure,” Collins said in a statement to the Press Herald. “The ‘Ice Bucket Challenge’ has been a phenomenal success in raising awareness, and I am delighted I was nominated to take part in it.”
Nell Davies, a Maine-based care services coordinator for the Northern New England chapter of the ALS Association, said the videos are making a difference, with donations up 57 percent from the same time last year.
In 2013, the Northern New England chapter received $27,943 between July 28 and Aug. 11. This year, by comparison, it has received $48,282 during the same time period.
Davies said the increase in donations is directly related to the challenge. “It’s really taken off,” she said.
The donations go toward ALS research, congressional and local advocacy for better benefits for those with the disease, as well as patient services, such as loans of equipment for people who cannot afford to buy the equipment themselves.
Davies works with about 65 people in Maine with ALS, but estimates that more people in Maine likely are afflicted with the disease.
MARKETING THE ALS CHALLENGE
There has been some backlash to the social media campaign, including an op-ed published in The Wall Street Journal last week and a blog on the online news site Slate, which argues that the ice bucket challenge is not original to ALS but was a game that predates Frates’ campaign and was started by professional athletes daring each other.
Teddy Stoecklein, creative director of the Portland-based VIA ad agency, said the ALS ice bucket challenge does have roots in a similar campaign he participated in last winter, when participants jumped in the freezing cold Atlantic ocean and donated money to raise awareness for the Wounded Warrior Project, which supports veterans.
Stoecklein said the ALS challenge has been so successful because it is simple. Most people have easy access to water, ice and a camera.
“This is definitely a trend and we’ll see it continue,” Stoecklein said. “It’s been incredibly successful and will be around for a while.”
However, Stoecklein said the message for the ALS ice bucket challenge has been muddled, with some participants changing the rules, not explaining what ALS is or forgetting to post a link to the donation site.
“It’s a case of a missed opportunity,” Stoecklein said. “It would have helped to have more strict parameters.”
With a clearer message, Stoecklein expects similar campaigns to carry on for another year before petering out.
“(The ice bucket challenge) is a topic of conversation around the grill or water cooler and is really ingenious,” Stoecklein said. “It’s a great way for charities to get involved with zero financial investment.”