Finding Hope
Project A.L.S. is funding research that could have a great impact on those living with ALS and other neurological diseases.

Valerie, Jenifer and Meredith Estess.

Jenifer Estess was a beautiful, successful woman of 35 who was about to launch her own company. Her life began to change dramatically in early 1997, when she was diagnosed with ALS – amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease (named after the baseball legend who died from ALS in 1941).

ALS attacks motor neurons; as a result, muscles weaken and lose their ability to move. A patient is unable to walk, speak and, eventually, swallow and breathe.

As the disease progressed in Estess’s case, the once physically active woman went from relying on a cane, to using a walker, to getting around in a wheelchair, to being bedridden.

Estess was blessed with two devoted and supportive sisters, and the three often discussed the lack of coordinated research and effective treatment for ALS with their close friend Julianne Hoffenberg. The talks inspired them to pool their efforts toward finding a cure; and, in 1998, along with Hoffenberg, Jenifer, Valerie and Meredith Estess founded and incorporated Project A.L.S., a nonprofit organization devoted to discovering a cure for ALS and finding an effective treatment for those living with it.

Their first fundraiser was a celebrity-packed gala at Manhattan’s Roseland, hosted by Ben Stiller. The evening was a huge success, and, soon after, doctors at Harvard, Columbia, The Howard Hughes Medical Institute and Johns Hopkins became the recipients of six-figure checks.

Project A.L.S. has really taken off: Not only has it sponsored and coordinated $22 million in research to date, it has raised public awareness of the disease and has become one of Manhattan’s most vibrant charities. This past February, Project A.L.S. was the beneficiary of the opening-night gala for the New York Design Fair held at the Seventh Regiment Armory.

During her descent into illness, Jenifer Estess authored her inspirational memoir, Tales from the Bed: On Living, Dying, and Having It All, as told to her sister Valerie, including a foreword by Katie Couric.

Jenifer died on December 16th, 2003, having made her mark by launching a movement that has produced hope for those suffering from ALS as well as from other devastating neurological diseases.

“In 2005 patients will participate in a human gene therapy trial. That might be the long-sought-after medicine – and where the hope lies,” says Valerie Estess, director of research for Project A.L.S.