Golf outing helps Wheaton athlete fight ALS

  • Brian Schnurstein, diagnosed with ALS last year at age 29, is savoring all the moments he has with his wife, Lindsey, and their daughter, Kylie, now 2. ALS sufferers typically live just three to five years after diagnosis.

    Brian Schnurstein, diagnosed with ALS last year at age 29, is savoring all the moments he has with his wife, Lindsey, and their daughter, Kylie, now 2. ALS sufferers typically live just three to five years after diagnosis. Courtesy of Brian Schnurstein

  • Nicknamed "The Horse," Brian Schnurstein had a strong pitching arm and played on a state champion football team. Now, ALS is weakening is body even as he fights for awareness, research and, ultimately, a cure for the disease.

    Nicknamed "The Horse," Brian Schnurstein had a strong pitching arm and played on a state champion football team. Now, ALS is weakening is body even as he fights for awareness, research and, ultimately, a cure for the disease. Courtesy of the Schnurstein family

 
 
Updated 7/17/2011 10:58 AM

Amyotrophic lateral sclerosis has not sapped Brian Schnurstein of what is most important.

The deadly neurodegenerative disease may have rendered feeble the arm that threw 80 mph fastballs, may have weakened the legs that ran down ballcarriers for a state high school football champion.

                                                                                                                                                                                                                       
 

Yet, plunged into a disease that has no cure -- nor even a defined cause -- Schnurstein's mind and spirit remain intact. With that, and the support of his wife and young daughter, the former high school and college athlete once known as "The Horse" continues to welcome each day.

"I always say that getting mad or getting upset isn't going to change a thing," said Schnurstein, a 1999 Wheaton Warrenville South graduate who now lives in Portage, Mich., outside of Kalamazoo.

Diagnosed with ALS in March 2010 at age 29, he was forced to contemplate an anticipated life expectancy of between three to five years. More than half of all patients live longer than three years after diagnosis, according to the ALS Foundation, and about 20 percent will live five years or more.

"So if I only have a short time left, I want to be happy and I want to do things with my wife (Lindsay) and daughter (2-year-old Kylie) and just enjoy life while I still can," he said. "My family is really what motivates me to keep fighting and just enjoy each day, even though it is a struggle."

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Even as modifications such as a wheelchair ramp are being constructed in his home, Schnurstein is not taking this fight lying down. The second annual Swingin' 4 Schnur golf outing and dinner, Tuesday, July 19, at Arrowhead Golf Club in Wheaton, is meant not only to defray the Schnursteins' expenses, but also to raise awareness of the disease whose most famous victim owned a nickname similar to Schnurstein -- baseball legend Lou Gehrig, the "Iron Horse."

Schnurstein has plenty of folks in his corner besides his young family, parents Ray and Wendy Schnurstein and older brothers Steve and Ray. The golf scramble has sold out a second straight year. Adding to the 160 golfers who've signed up, some 500 people may attend the dinner portion. It includes a silent auction and raffle and will feature an appearance by Keith Van Horne, a former Chicago Bear who advocates ALS research and awareness. Registration, $35 per person, is still available for the 6 p.m. dinner.

Last year's event raised $75,000 before expenses. Most of the funds are used to defray Schnurstein's medical bills -- like life-extension medication that costs him $12,000 a year -- but he said some will also go to the ALS Foundation and the ALS Therapy Development Institute.

Jon Beutjer, one of Schnurstein's teammates on that 1998 Tigers state football title team, who is helping organize Swingin' 4 Schnur, said a highlight of the 2010 event was the guest of honor's address to the dinner audience.

                                                                                                                                                                                                                       
 

Schnurstein will deliver a command performance Tuesday, as well as show a video he's made, also viewable on his own website, alsbeaware.com.

"I felt last year that Brian was helping us," said Beutjer, who praised the area business community's generosity in providing auction items. "We were there to support him, but he was inspiring us. It was amazing."

Schnurstein's father, Ray, called the event "spectacular." That mirrors his son's outlook despite the dire situation.

"He has a great attitude, and that's really helped all of us through this whole ordeal," said Ray Schnurstein, who though retired, still acts as a consultant for Wheaton's Public Works Department. Wendy Schnurstein retired from her job as Wheaton Warrenville South's athletic department administrative assistant in 2008.

Ray Schnurstein admitted Brian's "clock is really ticking" in his battle against ALS.

"I think it's very courageous on his part to take that kind of position," Ray said. "He knows he's probably not going to be around too much longer, and to be able to stand up every day, to be able to have a bright attitude and to try to educate people … I think, from my own perspective and my wife's, I don't know he'll be around when they find a cure for ALS, but I think he'll be a part of the cure for ALS. I think it's a pretty big person who can stand up and do that."

Standing, literally speaking, is a challenge for Brian Schnurstein, who continues as a home-based national account representative for the Stryker Corporation medical device company. He's determined, however, to devote all he can to bring ALS to its knees. In May, for example, the Schnursteins went to Washington, D.C., to lobby legislators to continue funding ALS research; a month later the House Appropriations Committee approved $6.8 million toward it.

"There's a lot more people working on it and researching it day in and day out," Schnurstein said. "I'll just keep my spirits up, keep my fingers crossed and keep praying for a cure, or at least a treatment to slow it down."