Thursday, February 11, 2016

Elkhart Community Schools board president Dorisanne Nielsen, with her back to the camera, watches Mary Daly Elementary teachers and staff take the Ice Bucket Challenge Friday, Aug. 22 to raise money for ALS. Nielsen lost her husband Richard to the disease in 1993. (JEFF PARROTT/The Elkhart Truth)
Ice bucket challenge hits close to home for Elkhart school staff

Posted on Aug. 23, 2014 at 2:06 a.m.

ELKHART — About 35 teachers and staff at Elkhart’s Mary Daly Elementary doused themselves with ice cold water Friday, Aug. 22 in what’s become a very common scene in America.

Millions of people are challenging each other via social media to brave the icy chill and make a donation to the ALS Association, a nonprofit that provides services and funds research into treatments and hopefully a cure for amyotrophic lateral sclerosis, a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.

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But these Ice Bucket Challenge participants had an experience different than most. Before dumping their buckets, they heard firsthand from someone who’s lost a loved one to the disease.

In 1993, Dorisanne Nielsen, Elkhart Community Schools board president, lost her husband Richard to ALS.

"There are no medications, and there’s no cure, and it’s a death sentence if you get it," Nielsen told the group as they held their full buckets outside the school after the students had gone home. "Some people handle it better than others but it’s hard on caregivers and everyone. What you’re buying is hope. What research will buy is that somebody wakes up in the morning and thinks, ’maybe today it will be alright.’ So thank you for this."

With that, Nielsen counted out, "Three, two, one!"

And there were suddenly a lot of cold, wet, screaming and laughing teachers and staff. Nielsen remained warm and dry.

"Nobody’s going to dump water on me because I give generously to them already,” she said.

The group then challenged other Elkhart schools to take part, and the corporation planned to post the event on Facebook.

Lisa Regan, a reading interventionist, blamed former school custodian Ondrace Malone for challenging her and a few other staff on Facebook.

"I said, ’Let’s do it all together instead of one at a time,’” Regan said. “Here we are now talking to the paper. It started as a small thing."

Not unlike the phenomenon itself.

Nielsen isn’t on Facebook. She still writes letters by hand to her college friends. But she is aware of what’s happened over the past few weeks. She said someone recently asked her whether she thinks people are donating simply to feel good about themselves, or for the glamour of being seen on video, or because everyone else is doing it.

She said she doesn’t care about motivations.

"I don’t care how they’re doing this,” Nielsen said. “It’s raising millions of dollars for a cause that’s never had much money.”

As of Friday, the ALS Association had received $53.3 million in ice bucket donations, compared to $2.2 million during that same time period, July 29 to Aug. 21, last year, according to a press release from the organization. The donations have come from existing donors and 1.1 million new donors. The association provides care and services for people suffering from the disease, as well as research into new treatments and a cure.

The Mary Daly group collectively raised $380, and Nielsen said she will add $70 to boost the total to $450.

Those who say they’re tired of seeing their Facebook feeds filled with ice bucket challenge videos “have no idea what it’s like to have the disease or know anybody who’s had it,” Nielsen said. “I’m not going to find fault with it.”