Last week Project ALS hosted their 24th Annual Gala, Tomorrow is Tonight, at Bowlero at Chelsea Piers. Rather than a typical black-tie dinner, we went bowling! The evening honored Ben Stiller, his wife Christine Taylor, and their kids Ella and Quin, who like its founders, have made Project ALS a family affair.
Project ALS was founded by sisters Valerie, Meredith, and Jenifer Estess. In 1998, Jenifer, a 35-year-old New York theater and film producer, was diagnosed with ALS (amyotrophic lateral sclerosis), a progressive neurodegenerative disease that destroys nerve cells in the spinal cord and brain which control voluntary muscle movement, eventually leading to paralysis and death.
Prior to Jenifer’s diagnosis, the sisters had been planning to start an entertainment company. They had always wanted to work together and had just put together a business plan when out of nowhere Jenifer was diagnosed with ALS. “Her symptoms presented as unimpressive at first”, Valerie told me, “general weakness, getting tired after walking a couple blocks, muscle twitches and stuff like that. She went to the doctor who said nothing was wrong. Go see a shrink.”
Jenifer went to a neurologist instead, and an Electromyography (EMG) confirmed she had ALS. Her doctor prescribed that she max out her credit cards and eat junk food. “Needless to say we were all sent reeling and our business plan had to be revisited,” says Valerie. “We decided to look around and see if we could attach ourselves to any effort being made to understand and treat this disease.”
Many of you will remember the Jerry Lewis Telethon every Labor Day for the Muscular Dystrophy Association, which also represents some ALS services. The Estess sisters spoke with them and later The ALS Association, but neither of those charities were really devoted to research. “The two biggest charities were about creating patient services — which don’t get me wrong, are critical — but nobody was really taking a stab at what was going on with this uniformly fatal disease. That’s why we started Project ALS.”
Project ALS is a non-profit 501(c)3 that has set forth a new paradigm for ALS research. It is the world’s first ALS organization to focus exclusively on research towards effective treatments and a cure for ALS. “We recruit the world’s best scientists and doctors to work together — rationally and aggressively — to develop a better understanding of the ALS disease process, and in parallel, better therapeutic strategies.”
A friend from the business, Ben Stiller was the first person Jenifer called when they started Project ALS. Her thought was to throw fundraisers in New York and Los Angeles as a start, and Ben could help in those efforts. He jumped on board, and as he built his family, they all got on board – somewhat literally. His wife, actress Christine Taylor, is now on the Board of Directors of Project ALS. As parents they have always included their kids in their advocacy for Project ALS. To be honored as a family made the recognition that much more meaningful.
The Gala raised close to $1 million. In 23 years, Project ALS has raised over $110 million and advanced ALS research significantly. They have overseen collaborations among 25 leading research and academic institutions, the discovery of over 60 ALS genes, and accelerated drug testing and clinical trials — among numerous other groundbreaking advancements towards a cure.
ALS is also known as Lou Gerhig’s disease, named after the legendary baseball player who died of the disease in the prime of his career. Sporting events have long been a part of fundraising at Project ALS, so a bowling gala was not out of the norm. “ALS is a motor neuron disease that results in a progressive loss of all your voluntary muscles. Sports are a celebration of the coordination of all these beautiful muscles and healthy brains”, says Valerie. “It is a striking juxtaposition that many of our efforts to raise money for ALS research come through sport.”
Project ALS is moving closer to the first effective ALS treatments because Jenifer believed that problems are solved faster when people work together. Meredith is now President of Project ALS, and Valerie is Director of Research. Jenifer died in 2003, but she set the ethos for the company. Says Valerie, “We’re just following it through, inspired by her spirit and eternal flame.”
Photos by John Halpern (top from left, #1,2,5 by Stacey Griffith)