Posted on Tue, Dec. 23, 2003
Los Angeles Times

Jenifer Estess, a theater producer who founded Project ALS to research a cure for Lou Gehrig's disease after she was diagnosed with the malady in 1997, died last Tuesday at home in New York. She was 40.

The cause of death was amyotrophic lateral sclerosis, the formal name for Lou Gehrig's disease, her sister, Valerie Estess, said.

The degenerative condition, which attacks the cells that control the muscles, afflicts more than 30,000 Americans and is usually fatal. Life expectancy for those who have the disease is two to five years.

Before her disease was diagnosed, Ms. Estess co-founded the Naked Angels, a theater troupe based in New York, with actors Matthew Broderick and Marissa 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, who is 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 from her 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.''

In the five years since Project ALS was founded, it has raised $17 million for research, largely through celebrity-studded events held in New York and Los Angeles.

Support from the Hollywood community led to ``Jenifer,'' a television movie about Ms. Estess' life that aired on CBS last year.