ALS patients: Keep the Ice Bucket Challenge flowing - LancasterOnline: Local News

ALS patients: Keep the Ice Bucket Challenge flowing

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Posted: Sunday, August 17, 2014 8:00 am | Updated: 7:52 am, Fri Aug 29, 2014.

Chantelle Delaney and five of her family members simultaneously dumped frigid ice water on their heads this week.

It’s the latest trend to take social media by storm.

You dump a bucket of ice water on your head and post a video of it on social media sites, challenge your friends to do the same within 24 hours and use the hashtag #IceBucketChallenge to help spread the word and raise funds for ALS, also known as Lou Gehrig’s disease.

It's working.

Nationally, between July 29 and Aug. 14, the ALS Association has received $9.5 million from donors.

That’s six times more than the $1.6 million raised during the same time frame last year, according to Tony Heyl, director of communications for the ALS Association Greater Philadelphia Chapter.

About 185,000 donors had never contributed to the association before, he said.

Heyl said the association is poised to hit the $10 million mark by the end of the weekend.

The deal is, if you don’t take the challenge, you’re supposed to donate $100 to ALS.

Some participants are bending the original rules, telling their friends to donate an amount within their means even if they decide to douse themselves in ice water.

Some are participating but not making a donation. That may seem contrary to the spirit of the challenge, and may lead some people to dismiss it as yet another example of slacktivism, or ineffectual social media activism.

If you ask the ALS Association and those living with the disease, the challenge is more than just a social media phenomenon or a way to get a couple of “likes” on Facebook.

“We won’t get anyone to donate if they've never heard of the disease,” said Ted Harada, an ALS patient and 1989 graduate of Manheim Township.

Harada, who now lives in Georgia and is an advocate for ALS, is benefiting from research as he undergoes an experimental stem cell treatment as a possible cure for the disease.

So far, for Harada, the treatment is working, giving him hope for the future.

He hopes the ice bucket challenge continues to make similar treatments possible.

“(ALS) comes in, it takes a family by storm, it kills the person and then there are no survivors so there is no growing demographic out there to tell the story of ALS,” Harada said. “I feel like for the first time ever, the story of ALS is being told. Finally, people are going to understand this universally fatal disease."

Harada said officials with the Georgia chapter of the ALS Association, where he sits on the board, said the influx of money from the ice bucket challenge craze will be used for research.

“At the end of the day, what we all want is a chance at life,” Harada said. “That hope is only going to be brought to fruition through research.”

Amyotrophic lateral sclerosis, more commonly referred to as ALS, or Lou Gehrig’s disease, is a neurodegenerative disorder that affects nerve cells in the brain and spinal cord. It can take away a person’s ability to walk, speak and even breathe.

It has a 100-percent fatality rate.

Chantelle Delaney, whose cousin, Karen Delaney, battles Lou Gehrig’s disease, said she was skeptical of the challenge when it was initiated by former Boston College baseball player and ALS patient Pete Frates.

“My fear was people were just going to dump ice water and nothing was going to happen,” Delaney, of Willow Street, said. “But with the amount of coverage it's getting, if one out of every five people researches it and learns something about it, that's worth it right there.”

Delaney said the ice bucket challenge became a family event as her cousin and other family members dumped the chilly water together.

The challenge has caught the attention of professional athletes like Roy Halladay, who challenged Phillies GM Ruben Amaro Jr., politicians including New Jersey Governor Chris Christie and celebrities like host of The Tonight Show, Jimmy Fallon.

Locally, at the Rock Lititz Studio, Clair Global and Tait Towers have been motivated by a friend of the company who has ALS to take the challenge.

Each company will be making an individual donation, according to Rock Lititz studio manager Sarah Zeitler.

Heyl said most people who have doused themselves have also chosen to donate and, at the ALS Association Greater Philadelphia chapter team numbers for awareness walks and other events are on the rise.

That gets Harada excited for the future as he said he has lost sleep since the craze took over social media.

“I'm pumped about it. I'm a very energetic guy and I feed off this type of stuff,” Harada said. “Now we have to capitalize on it, take advantage of this awareness and leverage it to a long term awareness program.”

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