Ride For Life: Filmmakers focus on family, ALS

Documentaries are intimate by nature, but even so, local filmmakers Steve Ascher and Jeanne Jordan knew they were asking a lot of Stephen Heywood and his family. At 29, Heywood was diagnosed with the paralyzing neural disorder ALS, which meant he might have only two to five more years to live. Stephen's older brother, Jamie, refused to accept that and started a foundation to find a cure for ALS.

By the time Ascher and Jordan learned about the Heywoods, the family's story had been told in The New Yorker, on ''60 Minutes," and in various newspapers, and they'd initially passed on being in the duo's proposed film. The project had personal resonance for the husband and wife filmmakers: Jeanne's mother, Mary Jane -- featured in the couple's previous film, ''Troublesome Creek" -- had been diagnosed with ALS and later died from it.

In making her pitch to the Heywoods, Jordan was forthright in saying her own mother wouldn't have allowed her and Ascher to film her struggle with amyotrophic lateral sclerosis, also known as Lou Gehrig's disease. But that was exactly what Jordan hoped the Heywoods would agree to do.

''I felt it was important to say that to them because it was true and they had to trust us if we were going to do this," says Jordan. ''What we were asking of them was bigger than they could possibly know."

The result is ''So Much So Fast," a moving and funny documentary that starting tomorrow has five screenings at the Sundance Film Festival. The movie, produced by the couple's Newton-based West City Films, had a sold-out one-night screening at the Museum of Fine Arts last fall. Stephen Heywood, who got a standing ovation that night, plans to attend Sundance as well.

Jordan and Ascher have been making films for more than 20 years, and their first trip to Sundance came in 1996 when they presented ''Troublesome Creek," the story of the Jordan family's struggle to save its Iowa farm. The film won prizes at numerous festivals, including the Grand Jury Prize and an Audience Award at Sundance, and was nominated for an Oscar.

Ascher and Jordan are taking a low-key attitude to their return to the festival, focusing on screenings of ''So Much So Fast" while looking for a national distributor. After the film runs in theaters, it's expected to air on PBS next year.

Jordan recalls that while the scene at Sundance was already bustling and hectic when they first went, it's even more so now. With all of the wheeling and dealing that gets done, the couple is hoping they'll be able to step back and enjoy themselves.

''It was chaos, insanity," Jordan says of their first visit. ''I have talked to a lot of friends who've been in the last 10 years, and they've said the key is to just be here now."

Long before Sundance beckoned, Jordan and Ascher were embroiled in the day-to-day lives of the Heywoods, a close-knit family whose members were all affected in various ways by Stephen's illness. Jamie Heywood quit his job to start the ALS Therapy Development Foundation. Although he has no training in biology, Jamie gathered scientists and others to find a cure for ALS. (Drug companies consider ALS an ''orphan disease," which means that while thousands of people are afflicted, it doesn't make financial sense for them to devote major resources to it.)

Ascher says it took time to follow that part of the story as well as showing how Stephen and his family (his wife, Wendy, and infant son, Alex) dealt with the diagnosis. The filmmakers were drawn to a subject that would play out slowly, and they often spent time with the Heywoods when they weren't shooting.

''There's a kind of complexity in film that you can get to only by taking the time to explore different story threads and also the time in editing to weave those threads together," Ascher says.

Dark humor is one of the strongest threads in ''So Much So Fast." The film shows how Stephen's condition changes as he goes from walker to wheelchair, and how he has to communicate using a computer when he can no longer speak. But throughout, he maintains a wry sense of humor. When asked what he would have done differently in the years since his ALS diagnosis, Stephen says: ''Have more sex on film."

''I think Stephen felt it was valuable to him to have his experience captured," says Ascher. ''Part of what we felt we were doing was creating a record for his son, Alex."

While Ascher and Jordan shepherd their film through Sundance, they've also moved on to other projects, including a new documentary called ''Raising Renee." But their connection to the Heywoods remains strong.

''I said to them at the beginning, 'We're not just asking to film you, we're asking to be part of your family,' " Jordan says. ''And it came true."