Project ALS
Project ALS is a non-profit organization whose mission is to identify and support leading scientific research toward the first effective treatments and a cure for ALS. Founded in 1998 by Jenifer Estess, Valerie Estess, Meredith Estess, and Julianne Hoffenberg, Project ALS recruits scientists and doctors to work together — rationally and aggressively — toward a better understanding of ALS and other closely related neurodegenerative diseases.
History
Project ALS was founded in 1998 as a non-profit 501(c)3 organization when Jenifer Estess, a 35-year-old New York theater and film producer, was diagnosed with ALS. Historically, scientists working separately on various aspects of the disease conducted ALS research. Project ALS changed that approach by requiring that researchers and doctors work together, share data openly, and meet research milestones.
Project ALS’s Research Advisory Board (RAB) brings together accomplished scientists to seek out the most promising research and set the agenda for the entire research field.
Leadership
Research Advisory Board: Thomas Jessell, Ph.D. (Chairman) Investigator, Howard Hughes Medical Institute; Professor of Biochemistry and Molecular Biophysics, Columbia University Nancy Bonini, Ph.D. Professor of Biology, University of Pennsylvania Robert H. Brown, Jr. M.D., D.Phil Professor and Chairman of Neurology, University of Massachusetts Medical School Juan Burrone, Ph.D. Professor of Development Neurophysiology, King’s College London Elizabeth Engle, M.D. Investigator, Howard Hughes Medical Institute; Professor of Neurology and Ophthalmology, Harvard Medical School; Senior Associate, Children’s Hospital Boston Gerald Fischbach, M.D. Dean Emeritus, Faculties of Health Sciences and Medicine, Columbia University Medical Center; Chief Scientist and Fellow, Simons Foundation Alfred Goldberg, Ph.D. Professor of Cell Biology, Harvard Medical School H. Robert Horvitz, Ph.D. Investigator, Howard Hughes Medical Institute; Professor of Biology, Massachusetts Institute of Technology Arthur L. Horwich, M.D. Investigator, Howard Hughes Medical Institute; Professor of Genetics, Yale School of Medicine Jeff Porter, Ph.D. Head, Developmental and Molecular Pathways, Novartis Institutes for BioMedical Research Lewis P. Rowland, M.D. Professor of Neurology, Columbia University College of Physicians and Surgeons
Board of Directors: Robert Steven Kaplan (Chairman), F. Jonathan Dracos (Co-Chairman), Debbie Wilpon (Co-Chairman), Harriet Abramson, Michael Berman, Rob Burnett (producer), Darci Carlton, Charles G. Cascarilla, Aimee David, Meredith Estess, Valerie Estess, Arthur Fraser, Stacey Griffith, Brad Grey, 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, Robert S. Wolf
Research
ALS in a Dish
In 2008, scientists from the Jenifer Estess Stem Cell Lab, Harvard, and Columbia achieved the Time “Scientific Breakthrough of the Year” by reprogramming motor neurons from a small sample of skin from an ALS patient — a method known as iPS, or induced pluripotent stem cell technology.
Improving Cell Metabolism
A cell’s inability to metabolize proteins is a hallmark of ALS, Alzheimer’s, Parkinson’s and Huntington’s diseases. The Project ALS team led by researchers at Harvard and the University of Massachusetts is studying pathways responsible for poor protein management in ALS.
Ocular Motor Neuron Resistance study
ALS affects nearly all voluntary muscles in the body except for the muscles controlling eye movement. Project ALS is driving a six-laboratory study of ocular motor neuron resistance. The goal is to confer resistance upon more vulnerable motor neurons in ALS.
Lipids
Project ALS researchers at Columbia University have identified distinctive lipid signatures that may lead to early diagnosis and information about disease progression.
Celebrity involvement
Jennifer Aniston, Mario Cantone, Katie Couric, Bobby Flay, Judy Gold, Gaby Hoffmann, Andrew Jarecki, Nancy Jarecki, Richard Kind, Julianna Margulies, Anne Meara, Rob Morrow, Vincent Piazza, Brad Pitt, Caroline Rhea, Paul Rudd, Sarah Silverman, Jon Stewart, Ben Stiller, Jerry Stiller, Christine Taylor
Initiatives
Women & the Brain, The Don't Talk-a-thon
References
Sources
- Park, Alice (3 November 2008). "First Neurons Created from ALS Patients". Time.
- Estess, Jennifer (24 May 2004). "Soul Sisters" (PDF). People.
- Langreth, Robert (16 April 2001). "Refusing to Die" (PDF). Fortune.
- Wadler, Joyce (27 January 1999). "Immobilized, and Energized, by an Illness" (PDF). The New York Times.