OUR MISSION

Project ALS identifies and funds the most promising scientific and medical research that will lead to the first 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.

WHY WE STARTED

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.

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.

LEADERSHIP

“At Project ALS we believe that if you assemble a world class group of researchers and clinicians and have them work together as a team, enormous progress can be made in ALS research.”
– Robert S. Kaplan, Chairman, Project ALS Board of Directors, President & CEO, Federal Reserve Bank, Dallas

BOARD OF DIRECTORS

ROBERT S. KAPLAN
Co-Chairman

DEBBIE WILPON
Co-Chairman

ADAM BRENEMAN

ARTHUR FRASER

BONNIE VERBITSKY

CHARLES G. CASCARILLA

CHRISTINE TAYLOR

DANIEL KELLISON

DARCI CARLTON

DAVID L. JAFFE

DEBRA WASSERMAN

F. JONATHAN DRACOS

GENA FAJGENBAUM COMBS

JACK MERRILL

LARRY TARICA

LORI HIRSHLEIFER

MARCIE FLECK

MARTHA MCCULLY

MEREDITH ESTESS

MICHAEL BERMAN

NANCY JARECKI

PETER J. HULBERT

REGINA K. SCULLY

ROB BURNETT

ROB MORROW

SIMON HALLS

STACEY GRIFFITH

STACI KIRCHHOFF

SUE LEIBMAN

VALERIE ESTESS

“Project ALS, before any other organization, brought together basic scientists and clinicians to attack ALS in a collaborative way.”
– Tom Maniatis, PhD, Principal Investigator, Maniatis Lab, Columbia University

RESEARCH ADVISORY BOARD

NEIL SHNEIDER, MD, PHD (CHAIR)

Director, Eleanor and Lou Gehrig ALS Center; Associate Professor of Neurology, Columbia University; Director, Project ALS Therapeutics Core at Columbia University

EIMAN AZIM, PHD

William Scandling Developmental Chair & Assistant Professor, The Salk Institute for Biological Studies

ELIZABETH ENGLE, MD

Investigator, Howard Hughes Medical Institute; Principal Investigator & Senior Associate, Boston Children’s Hospital; Professor of Neurology and Ophthalmology, Harvard Medical School

GERALD D. FISCHBACH, MD

Distinguished Scientist and Fellow, Simons Foundation; Dean Emeritus, Faculties of Health Sciences and Medicine, Columbia University Medical Center

JAMES M. WILSON, MD, PHD

Rose H. Weiss Professor and Director, Orphan Disease Center; Professor of Medicine & Pediatrics and Director, Gene Therapy Program, University of Pennsylvania; Advisor and Co-Founder, Scout Bio and Passage Bio

AI YAMAMOTO, PHD

Associate Professor of Neurology, Departments of Neurology, Pathology, & Cell Biology at Columbia University

ROBERT H. BROWN, JR., MD, DPHIL

LaChance Family Chair in Medical Research & Professor of Neurology, University of Massachusetts Medical School

H. ROBERT HORVITZ, PHD

Investigator, Howard Hughes Medical Institute; David H. Koch Professor of Biology, Massachusetts Institute of Technology

LEWIS ROWLAND, MD In Memoriam

“My friends and family and I built a road. Project ALS will continue to search until it finds medicine to help people who are dying cruel and inhuman deaths. There are so many roads for us to build that we can and must build.”
– Jenifer Estess, Founder, Project ALS

FOUNDERS

MEREDITH ESTESS

VALERIE ESTESS

JENIFER ESTESS

JULIANNE HOFFENBERG

STAFF

MEREDITH ESTESS

President

GAIL CARSON

Controller

VALERIE ESTESS

Director of Research

MADELYN WEINSTEIN

Operations & Development

ERIN FLEMING

Director of Research Operations

MARGOT SHANAHAN

Research Coordinator