Ben Byer was 31 when he was diagnosed with amyotrophic lateral sclerosis, or ALS, and given two to five years to live. His son, John, was just two. As he walked John to preschool one day afterward, the boy asked, “Are you afraid to die?”

As a journalism student at Indiana University, the Evanston native traveled to Paris to study film and ended up dropping out of school to stay a while. When he returned to the U.S. a year later, he packed a pickup truck and headed west to produce movies. By 1994 he was back in Chicago and had switched to acting, performing in off-off-Loop plays and chauffeuring tourists around in a horse-drawn carriage to make ends meet. He gave Hollywood another brief shot years later, driving a meat truck to pay the bills. By the time he returned to Chicago yet again in the late 90s, he was seasoned enough to secure regular acting and writing gigs and eventually produce his own plays. He’d just finished Take It Deep, a semiautobiographical play about a door-to-door meat salesman, when he started to lose strength in his hands and slur his words. In September 2002 he was diagnosed with ALS, the degenerative neuromuscular condition also known as Lou Gehrig’s disease.

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There’s no known cure or proven effective treatment for ALS. Byer’s parents became passionate advocates for alternative remedies. His father, Stephen, developed a distribution network for the Chinese herbal mixture BuNaoGao (literally, “to nourish the brain”), which alleviated some of Byer’s symptoms for a while. And Byer went to China to undergo a controversial—sometimes fatal—procedure in which fetal cells were injected into his brain and spine. The results seemed promising—within days, his speech was remarkably clearer—but didn’t last.

Rush believes that even in death her brother can further the search for effective treatments. “Michael J. Fox and the pope [John Paul II] did so much for Parkinson’s research because people could identify with them,” she says. “Ben can be that person for ALS. He’s so charismatic. He’s anybody’s brother or friend or son or father.”

Fri 7/18, 8 PM, Mon 7/21, 7:45 PM, and Tue 7/22, 8:30 PM, Gene Siskel Film Center, 164 N. State, 312-846-2600 or siskelfilmcenter.org.