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
