[Deathwatch] Jenifer Estess, theater producer, 40

[Deathwatch Central <cdw@slick.org>]

Jenifer Estess, 40, Producer, Founded Project ALS
December 23, 2003

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 Dec. 16 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, told the Los
Angeles Times.

The degenerative condition, which attacks the cells that control the
muscles, now 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, Estess co-founded the Naked Angels, a
theater troupe based in Manhattan, with actors Matthew Broderick and
Marisa Tomei among the founding members.

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."

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!" Since Project ALS
was founded, it has raised $17 million for research, largely through
celebrity-studded events held 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 finding treatment of diseases such as Parkinson's and
Alzheimer's, Valerie Estess said.

Actor Billy Baldwin, a board member of Project ALS, told the paper that
after he heard Jenifer Estess had died, "I had a heartwarming feeling
that people will redouble their efforts. What the Estess women have
achieved is remarkable."

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 and studied acting and theater arts.
After graduating in 1984, she briefly worked as an actress before she
co-founded Naked Angels. As an Off-Broadway producer, Estess developed
a wide range of entertainment-world contacts who rallied around her
when her disease was diagnosed.

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, among other
actors, is scheduled for next spring. Her memoir, "Tales from the Bed:
On Living, Dying and Having It All," is planned for spring 2004
publication.

Last year, to mark the 61st anniversary of Lou Gehrig's death, Estess
and Project ALS arranged for baseball stadiums around the United States
to read Gehrig's famous farewell speech to New York Yankees 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; a sister, Alison, and a brother, Noah.