Jenifer Estess, 40; Theater Producer Founded Group to Research Gehrig’s Disease

Jenifer Estess, a theater producer who founded Project ALS to research a cure for Lou Gehrig’s disease after she was diagnosed as having the malady in 1997, has died. She was 40.

Estess died Dec. 16 at home in New York City. The cause of her death was amyotrophic lateral sclerosis, the formal name for Lou Gehrig’s disease, her sister, Valerie Estess, told The Times.

The degenerative condition, which attacks the cells that control the muscles, afflicts as many as 30,000 Americans at any given time, according Jeff Snyder, national spokesman for the ALS Assn. Life expectancy for those diagnosed with the disease is two to five years.

Before she was diagnosed, Estess co-founded the Naked Angels, a theater troupe based in New York City, with actors Matthew Broderick and Marisa Tomei among the founding members. She went on to help launch the Nantucket Film Festival and the New York Women’s Film Festival.

When she became ill in 1997, “Jenifer decided to put her best foot forward,” said Simon Halls of PMK-HBH Public Relations, a member of the board of directors for Project ALS. “She never thought of herself as having Lou Gehrig’s disease. She had one focus, to find a cure.”

She continued to give television and magazine interviews after she was confined to a wheelchair. Although she could no longer walk, she said in an interview with People magazine in 1999, “I can still speak. 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.”

Two of her three sisters, Meredith and Valerie, quit their jobs to help Jenifer launch Project ALS. Their longtime friend, theater producer Julianne Hoffenberg, joined them.

“It was an Andy Hardy moment,” Valerie Estess said Wednesday, referring to the 1940s movies in which the Hardy brothers would proclaim, “We can do this!”

In the five years since Project ALS was founded, it has raised $17 million for research, largely through celebrity-studded events in New York and Los Angeles. Most of the money has gone to stem cell and gene therapy research that might also be helpful in treating diseases such as Parkinson’s and Alzheimer’s, Valerie Estess said.

Actor William Baldwin, a board member of Project ALS, told The Times that after he heard that Jenifer Estess had died, “I had a heartwarming feeling that people will redouble their efforts.”

Born in Moline, Ill., Jenifer Estess grew up in Harrison, N.Y., as one of five children. Her parents divorced when she was 13 and she and her sisters worked at a doughnut shop to help with expenses.

She attended New York University, where she studied acting and theater arts. After graduating in 1984, she worked as an actress for a brief time before she co-founded Naked Angels in New York City.

As an off-Broadway producer, Estess developed a wide range of entertainment industry contacts who rallied around her when she was diagnosed with ALS.

“She doesn’t have an ounce of self-pity,” said actor Ben Stiller in an interview about Estess with People magazine in 1999. He first met her when they were both young actors in New York. Stiller is now a major fundraiser for Project ALS.

Support from the Hollywood community led to “Jenifer,” a television movie about Estess’ life that aired on CBS last year. A documentary about her and her sisters, co-produced by Brad Pitt, is scheduled for next spring. Her memoir, “Tales from the Bed: On Living, Dying and Having It All,” is also planned for spring 2004 publication.

In 2002, to commemorate the 61st anniversary of Lou Gehrig’s death, Estess and Project ALS arranged for baseball stadiums around the country to read Gehrig’s famous farewell speech to New York Yankee fans. As a Yankee, he said, he considered himself, “the luckiest man on the face of the Earth.”

At the time, Estess said in an interview with Newsday, she hadn’t “evolved” to that state of mind, but she said she was making progress.

“Once you conquer the fear ... of losing your life, a lot more opens up to you,” she said.

Along with sisters Meredith and Valerie, Estess is survived by her mother, Marilyn; sister Alison; and a brother, Noah.