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.
Over 25 years, Project ALS has raised more than $120 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, Former President & CEO of the Federal Reserve Bank of Dallas
BOARD OF DIRECTORS
ROBERT S. KAPLAN, Co-Chair
DEBBIE WILPON, Co-Chair
MICHAEL BERMAN
ROB BURNETT
CHARLES G. CASCARILLA
F. JONATHAN DRACOS
MEREDITH ESTESS
VALERIE ESTESS
GENA FAJGENBAUM GOTTFRIED
MARCIE FLECK
ARTHUR FRASER
STACEY GRIFFITH
SIMON HALLS
LORI HIRSHLEIFER-SILLS
PETER J. HULBERT
DAVID L. JAFFE
NANCY JARECKI
DANIEL KELLISON
STACI KIRCHHOFF
SUE LEIBMAN
MARTHA MCCULLY
ROB MORROW
REGINA K. SCULLY
TARA SPIEGEL
BRUCE SPOHLER
LARRY TARICA
CHRISTINE TAYLOR
BONNIE VERBITSKY
DEBRA WASSERMAN
FOUNDERS CIRCLE
WILLIAM BALDWIN
BRAD GREY, In Memoriam
JACK MERRILL
“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
EIMAN AZIM, PHD
William Scandling Developmental Chair & Assistant Professor, The Salk Institute for Biological Studies
GERALD D. FISCHBACH, MD
Distinguished Scientist and Fellow, Simons Foundation; Dean Emeritus, Faculties of Health Sciences and Medicine, Columbia University Medical Center
NEIL SHNEIDER, MD, PHD
Director, Eleanor and Lou Gehrig ALS Center; Associate Professor of Neurology, Columbia University; Director, Project ALS Therapeutics Core at Columbia University
ROBERT H. BROWN, JR., MD, DPHIL
LaChance Family Chair in Medical Research & Professor of Neurology, University of Massachusetts Medical School
DAVID GLASS, MD
Vice President of Research, Regeneron Pharmaceuticals, Inc.
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
ELIZABETH ENGLE, MD
Investigator, Howard Hughes Medical Institute; Principal Investigator & Senior Associate, Boston Children’s Hospital; Professor of Neurology and Ophthalmology, Harvard Medical School
H. ROBERT HORVITZ, PHD
Investigator, Howard Hughes Medical Institute; David H. Koch Professor of Biology, Massachusetts Institute of Technology
AI YAMAMOTO, PHD
Associate Professor of Neurology, Departments of Neurology, Pathology, & Cell Biology at Columbia University
THOMAS JESSELL, PHD In Memoriam
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
GAIL CARSON
Controller
VALERIE ESTESS
Director of Research
MELISSA DIAZ VIERA
Research Operations
ERIN FLEMING
Research Consultant
MARGOT SHANAHAN
Executive Director
MEREDITH ESTESS
President
SAGE HIGGINS
Administration & Community Engagement