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

  • MICHAEL BERMAN

  • ROB BURNETT

  • DARCI CARLTON

  • CHARLES G. CASCARILLA

  • GENA FAJGENBAUM COMBS

  • F. JONATHAN DRACOS

  • MEREDITH ESTESS

  • VALERIE ESTESS

  • MARCIE FLECK

  • ARTHUR FRASER

  • STACEY GRIFFITH

  • SIMON HALLS

  • PETER J. HULBERT

  • DAVID L. JAFFE

  • NANCY JARECKI

  • DANIEL KELLISON

  • STACI KIRCHHOFF

  • SUE LEIBMAN

  • MARTHA MCCULLY

  • JACK MERRILL

  • ROB MORROW

  • REGINA K. SCULLY

  • LARRY TARICA

  • CHRISTINE TAYLOR

  • BONNIE VERBITSKY

  • DEBRA WASSERMAN

"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

  • NANCY BONINI, PHD Professor of Biology, University of Pennsylvania

  • ROBERT H. BROWN, JR., MD, D. PHIL Professor and Chairman of Neurology, University of Massachusetts Medical School

  • JUAN BURRONE, PHD Professor of Development Neurophysiology, King's College London

  • ELIZABETH ENGLE, MD Investigator, Howard Hughes Medical Institute; Professor of Neurology and Ophthalmology, Harvard Medical School; Senior Associate, Children’s Hospital Boston

  • GERALD FISCHBACH, MD Dean Emeritus, Faculties of Health Sciences and Medicine, Columbia University Medical Center; Chief Scientist and Fellow, Simons Foundation

  • ALFRED GOLDBERG, PHD Professor of Cell Biology, Harvard Medical School

  • ARTHUR HORWICH, MD Investigator, the Howard Hughes Institute; Professor of Genetics, Yale School of Medicine

  • H. ROBERT HORVITZ, PHD Investigator, Howard Hughes Medical Institute; David H. Koch Professor of Biology, Massachusetts Institute of Technology; Neurobiologist and Geneticist, Massachusetts General Hospital, Boston

  • JEFF PORTER, PHD Head, Developmental and Molecular Pathways, Novartis Institutes for BioMedical Research

  • LEWIS ROWLAND, MD in memoriam, Professor of Neurology, Columbia University College of Physicians and Surgeons

  • NEIL SHNEIDER, M.D., PH.D. Professor of Neurology, Columbia University; Director, Eleanor and Lou Gehrig ALS Center

“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

  • JENIFER ESTESS

  • MEREDITH ESTESS

  • VALERIE ESTESS

  • JULIANNE HOFFENBERG

STAFF

  • VANESSA BORNHOLDT Office & Database Coordinator

  • GAIL CARSON Controller

  • MEREDITH ESTESS President

  • VALERIE ESTESS Director of Research

  • ERIN FLEMING Research Consultant

  • LAURA NICHOLAS Communications Manager