Jenifer Estess, a theatrical producer who set up a foundation for research into Lou Gehrig’s disease after she learned she had it, died on Tuesday at her apartment in Manhattan. She was 40.
The cause was amyotrophic lateral sclerosis, or ALS, as Lou Gehrig’s disease is formally known, her sister Valerie Estess said.
Her disease, a degenerative disorder of the nerve cells that control muscular movement, was diagnosed in 1997. It affects 30,000 Americans and is usually fatal in two to five years.
With friends and family members, Ms. Estess set up Project A.L.S., and, calling on her experience as a producer, she raised more than $17 million and brought together scientists from different laboratories to cooperate in the search for a cure.
Next May, HBO is planning to show a documentary about her.
