Jenifer Estess, a theatrical producer whose struggle with Lou Gehrig’s disease was recounted in the 2001 CBS telepic “Jenifer,” died Dec. 16 in Manhattan. She was 40.
Estess found that she had amyotrophic lateral sclerosis, or A.L.S., as Lou Gehrig’s disease is formally known, in 1997.
Born in Moline, Ill., she grew up in Harrison, N.Y., and graduated from NYU with a major in drama. She worked as an actor and helped found Manhattan theater company Naked Angels, for which she was producing director until 1993. She also worked at Baker Winokur Ryder public relations and helped found the Nantucket Film Festival and the New York Women’s Film Festival.
After discovering she had A.L.S., Estess and her sisters and friends set up Project A.L.S. and raised more than $17 million, bringing together scientists to search for a cure. In 2000, she testified before a Senate subcommittee with Christopher Reeve in favor of federal funding for stem cell research.
The orgs has also staged benefits involving celebrities in New York and Los Angeles and arranged for Project A.L.S. day in Major League Baseball stadiums in 2002.
The same year the biopic appeared, Estess was named Glamour magazine’s woman of the year. HBO is planning to show a documentary on her life, “Three Sisters: Searching for a Cure,” in May, when the publication of her memoir “Tales From the Bed: On Living, Dying and Having It All” is also skedded.
Estess is survived by three sisters, a brother and her mother.