CHANGING HOW ALS RESEARCH WORKS

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. 

ROOTED IN SISTERHOOD

In 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.

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.

COLLABORATION IS KEY

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.

FIRST non-profit devoted 100% to ALS and related research

• FIRST to recruit, fund, and require competing researchers to collaborate toward developing better ALS drugs.

• FIRST to use stem cell biology and technology in the study and treatment of ALS at the Jenifer Estess Stem Cell Laboratory, the world’s first and only privately funded lab to focus exclusively on stem cells and ALS.

• FIRST to derive motor neurons from individuals with ALS, now widely used for disease modeling and drug discovery.

• FIRST to launch partnership between a world-class academic institution and a leading nonprofit dedicated to uniting experts from different disciplines to provide a full-spectrum approach to ALS drug development: Project ALS Therapeutics Core.

• FIRST novel drug designed specifically for ALS to emerge from the Core is prosetin, currently in clinical trial.

TOGETHER WE WILL END ALS

Donate today and create a future free of ALS tomorrow.

90% of your donation will go directly toward our cutting-edge ALS research.