Nearly three years ago, Jenifer Estess, then 35, was, as she wryly puts it, “the perfect—and perfectly neurotic—New York girl”: a successful Manhattan theater producer who loved her work but felt it was time to work on love. She was seeing a shrink and exercising with a personal trainer—the better to be psyched and toned when she met Mr. Right. But on one of her first dating forays, her life plan was inexorably altered. “His elevator was broken, and it was a four-flight walk-up,” says Estess, now 38. “I was literally having trouble pulling myself up the stairs. By the time I got to his floor, I was covered in sweat.”
In March 1997, Estess was diagnosed with amyotrophic lateral sclerosis—the fatal illness known as Lou Gehrig’s disease. Among its barbaric characteristics, ALS destroys the cells that control muscles, robbing sufferers of the ability to move, speak, swallow and, finally, to breathe. There are about 30,000. Americans with ALS, 80 percent of whom will die within five years of diagnosis. The disease has already robbed Estess of her ability to walk, roll over, hug her nieces and nephews, even lift a cup of coffee. “But I can still speak,” she says. “And while I can, I’ll make sure no one else has to hear that there is no hope and no cure. That’s absolutely unacceptable.”
So, too, was the notion that she would fight her battle alone. Within months of her diagnosis, her sisters Meredith Estess, 36, a fashion executive, and Valerie Estess, 40, an advertising writer—both married with young children—quit their jobs to be with her. (Oldest sister Alison Estess, 41, a civil litigator for New York City, also married with children, helps out.) Six months later, the trio, with Jenifer’s friend Julianne Hoffen-berg—who eventually put her career as a theatrical producer on hold and moved in with Estess—created the nonprofit Project A.L.S., headquartered in the bedroom of Estess’s Greenwich Village apartment. Two splashy benefits generated $1.25 million in donations and drew big-name stars, including Calista Flockhart, Helen Hunt and Dylan McDermott.
Estess honed her powerhouse fund-raising skills—and famous friendships—a decade ago, as producing director of Naked Angels, the Off-Broadway theater troupe that has boasted Marisa Tomei, Matthew Broderick and Fisher Stevens among its members. “Whenever I call her up, because of her spirit, I forget she’s in a wheelchair,” says Ben Stiller, who was cohost at one of the events with 3rd Rock from the Sun’s, Kristen Johnston. “She doesn’t have an ounce of self-pity.”
Growing up with three sisters and a brother (Noah, now 34, lives in San Diego) in the comfortable New York City suburb of Harrison, Estess’s first life-isn’t-fair lesson came at 13, when her stockbroker father, Gene, left the household. He and Estess’s mother, Marilyn, were divorced soon after. The family was forced to move to a smaller home, and Marilyn went to work as a real estate agent. “I point to that experience,” says Estess, who has no contact with her father, “as when we sisters learned that if we came together we would get a lot done.” She grew especially close to Valerie and Meredith, working with them after school at local doughnut shops to help make ends meet. “Jenifer was the most coveted doughnut girl,” says Valerie, teasing. “She was chosen to work the grill.”
“They have always been one for all and all for one,” says their mother. “I am in awe of them.” They see themselves more like “the sisters in Sense and Sensibility—only Jewish,” says Estess. “Or The Godfather,” quips Meredith, as the sisters burst into rapid-fire banter about which of them is Don Corleone.
That would be Jenifer, says Jaqui Lividini, a high school classmate and now vice president of public relations for Saks Fifth Avenue, a Project A.L.S. corporate sponsor. “Even then, Jenifer had a presence,” she says. “She quietly commanded that you see her.” At New York University, Estess studied acting, graduating in 1984 with a bachelor of fine arts degree in theater. But it was with Naked Angels that her real gift emerged. “She would convince corporations and major magazines to support a start-up theater they’d never even heard of—and make them feel good about it,” says Hoffenberg, 33, who joined the company in 1988
In 1996, Estess began to experience involuntary twitches in her leg muscles and overall weakness, symptoms she wrote off to strenuous exercise and the stress of planning the first New York Women’s Film Festival. Initial examinations turned up nothing. But after a neurologist ran a muscle nerve test, she was told she had motor neuron disease, another name for ALS. The diagnosis was confirmed two months later by ALS pioneer Dr. Lewis P. Rowland at Columbia-Presbyterian Medical Center. “He asked me to sit on the floor,” Estess recalls. “Then he told me to get up. I couldn’t.”
At first, Estess and her family were immobilized by shock and grief. But when specialists had nothing better to offer than suggesting that she eat all the junk food she wanted or max out her credit cards, the sisters grew furious. “Can you imagine?” says Estess. “I’ve got a fatal disease, and I want a McDonald’s or a little black dress!”
Instead, they formed Project A.L.S. and became self-taught experts, “researching the researchers and their research,” says Valerie. Several times each month, Estess adds proudly, her sisters and Hoffenberg hit the road and “go to Harvard and Johns Hopkins and storm the hallowed halls.” “We don’t storm,” corrects Meredith. Valerie settles the dispute: “We demurely storm. When you sit down with the ability to write a check for $100,000 and talk to them in their own language, suddenly you are not a stressed-out chick who should go see a psychiatrist. You are taken seriously.”
As Dr. Jeffrey Rothstein can attest. “They grill the hell out of me,” says Rothstein, 44, an associate professor of neurology and neuroscience at Johns Hopkins and a recipient of two $100,000 Project A.L.S. grants. “But they’re right to do that. This is a really horrible disease that doesn’t stop you from thinking, smelling, feeling while you’re trapped in your body. Jenifer,” he adds, “is probably the first patient who brought me to tears with her intense and moving questions” about life and love and children. Says Estess: “The whole area of dressing up and putting on makeup, of romance and being with men, that has all been turned upside down. I can’t even brush my hair.”
Though her breathing is growing labored and she now requires round-the-clock nursing care (paid for by Medicaid and Social Security), Estess spends 12-hour days working from her bed or wheelchair. Her sisters, like sentries, are always nearby, making and taking calls on their cell phones, crossing and uncrossing Estess’s legs, holding a cup to her mouth. The circle of support grows on weekends—husbands, a new baby in a bassinet and older nieces and nephews who can’t get enough of their Aunt Jen-Jen. Friends, famous and not-so, drop by. “Jenifer has always been a magnet,” says Valerie. “She was the one who would make it, the one with the Malibu beach house that we’d all sponge off of. That’s still the plan.”
With reporting by Kelly Carter in Los Angeles