Going beyond the ice buckets to the real challenges ALS poses
This summer there's a good chance you've joined the smiling, shivering, sopping-wet masses.
Unless newly emerged from a cave lacking a wireless connection you're aware of the “Ice Bucket Challenge” to promote awareness of and donations toward research on amyotrophic lateral sclerosis, or ALS. It's a boon for the ALS Association that's engaged everyone — your delicatessen, former President George W. Bush, really important people such as Charlie Sheen.
People douse themselves with icy water, the event captured on video and downloaded online. They dump the bucket on themselves or enlist someone else. A friend or family member. The girls cross country team. A helicopter.
Once nominated for the Ice Bucket Challenge™ — yep, trademarked — one has 24 hours to either accept it or donate money toward ALS research. Many are doing both.
As of this writing the Ice Bucket Challenge Facebook page had 60,434 “likes” with numbers increasing by the minute. Back on Aug. 18 Time reported more than 2.4 million Challenge videos had been posted to Facebook, and it had been mentioned on that site some 28 million times.
The first news item about the Challenge on the ALS Association website was dated Aug. 6. But from July 29, when the movement really started going viral, to Aug. 24 the association had received $70.2 million in donations compared to $2.5 million over the same period last year. The association counted 1.3 million new donors.
There have been critiques against publicity-seeking celebrities riding the wave and cases of one-upsmanship in the creative execution of the challenge.
People had to get their dogs involved. The inevitable “Ice Bucket Challenge Fails” compilations followed. It sometimes felt a little self-indulgent.
The bottom line is that $70.2 million in donations and the greatest public acknowledgment of this untreatable, incurable neurodegenerative disease since the 1930s when it first truly had a human face, that of New York Yankees slugger Lou Gehrig. Mathematician and physicist Stephen Hawking was diagnosed with ALS in 1963 at age 21. Given two years to live, despite the progress of the disease he amazingly is still with us at 72.
Those folks are famous, but as many as 30,000 people have the disease at any one time according to the ALS Association. To those patients, and their families, the Ice Bucket Challenge is huge.
“The Challenge began in the midst of my tracheostomy procedure, so it certainly has been a blessing on a personal level,” Wheaton native Brian Schnurstein wrote in an email to the Daily Herald. In the final stages of ALS after being diagnosed in 2009, he cannot speak. His communication is limited to lip reading, texting and his one-finger, hunt-and-peck method on a computer keyboard.
“More important, this has generated unprecedented nationwide support and awareness for a relatively unknown disease that desperately needs the attention,” added Schnurstein, 33.
“I think it's great awareness for ALS,” agreed his father, Ray Schnurstein. When contacted last weekend Ray and his wife, Wendy, were helping out in Portage, Mich., home of Brian, his wife, Lindsay, and their 5-year-old daughter, Kylie. Brian now requires 24-hour nursing care.
“I guess as the father of a son who has ALS, and certainly Brian's sentiments to the whole issue, is we think it's fantastic. ALS is a disease not very many people have so it's not very well publicized or supported,” said Ray Schnurstein, who has done the Challenge along with the rest of his family, including two other sons, Ray and Steve.
We've written about Brian several times since his diagnosis and, honestly, this first Sidelines column of the 2014-15 prep sports year was headed in an entirely different direction.
That is, until receiving an email from another WW South graduate familiar with Brian Schnurstein's situation, and whose grandfather died of ALS. In addition to taking the Ice Bucket Challenge herself, the reader asked friends to donate to the cause, specifically to Brian and Lindsay Schnurstein to “have a direct impact on a family.”
“My heart aches for them, especially knowing how terrible this disease is from watching my grandfather battle it,” wrote the reader, who preferred to remain anonymous. “I guess I'm just a regular citizen who realizes that it is not about the ‘ice' but rather real people, young people, that are fighting this horrific disease.”
Other classmates have leapt to the cause. “Swingin' for Schnur,” a golf and dinner event began by a group including Schnurstein's brothers and the great former WW South quarterback Jon Beutjer, held its fifth annual outing in July. Between 400 and 500 people attended, Ray Schnurstein said.
“This year was probably the best one,” he said. “Brian had a lot of friends and family members that are all behind him and we're very proud of that fact. Everybody's really stuck together with him here, and he's not going alone on the fight.”
Tim Brylka, a football and baseball teammate of Schnurstein's both at Wheaton Warrenville South and Millikin University and now WW South's varsity baseball coach, has held an annual baseball fundraiser for the ALS Greater Chicago Chapter. Last spring all the DuPage Valley Conference teams participated in a two-day event at Benedictine University. With Brian on the field, Kylie threw out the first pitch before the WW South game.
“That was special,” said Brylka, who had an uncle who died of ALS.
Brylka is a big fan of the Ice Bucket Challenge. He first saw it in a video featuring Chicago Blackhawks Jonathan Toews, Patrick Kane and coach Joel Quenneville.
“It's awesome,” Brylka said. “It puts a smile on my face when I hear of somebody else who did it. We just can't comprehend what these people go through. There's no reason to knock it by any means. You're clueless if you do, you're insensitive.”
Shortly after the July golf outing, Brian Schnurstein underwent tracheostomy surgery to help remove mucous collected in his lungs that his body can no longer get rid of. He's on a ventilator, though he's been able to breathe on his own through the tracheostomy for up to 45 minutes at a time, Ray Schnurstein said.
Brian still loves watching sports on television. Amazingly, he works from home as much as possible for Stryker Medical, a medical technology company with a headquarters in Portage. At the time of his ALS diagnosis, he was a pricing analyst who had developed a price-equalization program that saved the company “millions,” Ray Schnurstein said.
“He's a smart guy and he had a bright future, and that's what's so disheartening to my wife and I, because he had a beautiful wife, a beautiful little girl, had a great job and now that's all going to be taken away from him and his life's going to be cut short, no doubt about that,” Ray said.
His son bears it, he said, with a positive attitude that has solidified and buoyed the family.
“Remarkable,” said Ray Schnurstein, and while the remarkable Ice Bucket Challenge won't change his son's fate, the hope is someday, for others, it will.
“We're all for it,” he said, “and hope it helps somebody else along the way to help finding a cure for this disease.”
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