WHY WE STARTED
n 1998, Jenifer Estess, a thirty-five year old New York theater and film producer, was diagnosed with ALS. Her doctor told her to “max out her credit cards and eat junk food.” At that time, ALS doctors and scientists worked mostly in isolation, with little support. No one was working together.
Jenifer, her friends and family, set out to change that–and make a difference in the lives of people diagnosed with ALS. They founded Project ALS as a non-profit 501(c)3 in 1998, and set forth a new paradigm for ALS research. Project ALS-funded doctors and researchers were required to work together in small teams, toward a new standard of results-oriented accountability.
Project ALS requires that its funded researchers communicate regularly, share data openly, meet project milestones, and submit progress reports twice annually. The Project ALS research advisory board, which gathers preeminent neurologists and neuroscientists across academia and industry, evaluates that progress regularly.
The paradigm shift has paid off. In twenty years, Project ALS has advanced ALS research significantly, overseeing productive collaborations among 25 leading research institutions, the discovery of over 60 ALS genes, the development of the world’s first patient based models of ALS for laboratory testing, supported and managed the first ever facility dedicated exclusively to ALS and stem cell research, and accelerated drug testing and clinical trials through the identification of new drug targets.
Project ALS is moving closer to the first effective ALS treatments because Jenifer Estess knew that complicated problems are solved faster when people work together.
In 20 years, Project ALS has raised over $90 million, directing between 80-93% annually to research programs.