Project A.L.S. is funding research that could have a great
impact on those living with ALS and other neurological diseases.
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).
Valerie, Jenifer and Meredith Estess.
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
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
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
“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.
|Photo credit: Brigitte LaCombe