It’s very personal,” Ben Stiller says of his close involvement with Project ALS. Ten years ago, his friend Jenifer Estess was diagnosed with amyotrophic lateral sclerosis (Lou Gehrig’s disease).
“Jenifer and I worked together at the Naked Angels Theater Company in New York, and nobody had heard of this disease. There was no real treatment. ALS attacks the body very quickly.”
Estess’ sisters, Valerie and Meredith, became very pro-active and started Project ALS to increase awareness of this neuromuscular disease. Fund-raising kicked off 10 years ago with a Roseland benefit hosted by Stiller and his mother, Anne Meara.
“It has grown. They hired a team of doctors. They’ve made real progress, and they have a full-time lab now,” Stiller says. “Jenifer passed away four years ago, but her sisters have kept the organization going.”
Dr. Mickey McGrath
Seven years ago, when Dr. Mickey McGrath was diagnosed with ALS, “We got no positive feedback,” recalls his wife, Aileen. “Neurologists and physicians told us there is no hope, no cure, no treatment. We were devastated.”
Then a friend sent them an article on Project ALS, published in Forbes. “It changed our lives,” says Aileen, who speaks for her husband. The couple began a dialogue with the philanthropy’s co-founder, Valerie Estess, who shared info regarding stem cell research and gene therapy. Equally important, the org introduced them to a cough-assistance machine and a vest that helps her husband loosen secretions. “Speaking with Valerie is like getting a shot in the arm. You feel better,” Aileen says.
— Robert Hofler