March 20, 2000
The Emily Davie and Joseph S. Kornfeld Foundation of New York and the Robert Packard Foundation have agreed to fund the multimillion dollar Center for ALS Research at The Johns Hopkins University School of Medicine.
The initiative will support an aggressive, collaborative, fast-track effort to understand, treat and ultimately cure amyotrophic lateral sclerosis, widely known as Lou Gehrig's disease. ALS, characterized by slow degeneration of motor neurons in the brain and spinal cord, and resulting in progressive weakness of muscles, claimed the life of the New York Yankees' "Iron Horse," Lou Gehrig in 1941. The Kornfeld Foundation of New York has pledged $4 million over five years to the center. The Robert Packard Foundation for ALS Research has pledged $730,000 in the year 2000 and has committed to the center a minimum of 50 percent of the funds it raises in the future.
Hopkins neurologist and neuroscientist Jeffrey Rothstein, M.D., whose laboratories have conducted extensive research into the biology of ALS, will direct the new Center. Designed "without walls," the center already supports more than 30 scientists from multiple departments at Hopkins. It will also include selected top ALS researchers from other leading institutions. At least 30 percent of the Center's research funds will be awarded each year to collaborators outside Hopkins. All Center investigators will meet monthly to review progress and new initiatives. According to Rothstein, results are likely to be produced much faster with Center funds and collaboration than through individual researchers waiting years to get federal funding.
Christopher Angell, president of the Kornfeld Foundation, said the foundation's concerns have always included human dignity and end-of-life issues, as well as neurological research.
"The foundation board unanimously decided to create a new model for research in ALS, which up to now has been very scattered," he explained. "We felt there was not enough being done in this area, especially at a time when technology and other advances have brought ALS research to the very edge of new discoveries.
"The foundation set out to concentrate enough resources to enable a much greater number of people at the forefront of this research to work aggressively and to work collaboratively, energizing and inspiring each other," he said. "Our investigations convinced us that Johns Hopkins is already a leader in the field and had extraordinary depth and talent, and that it is the best-equipped to take advantage of this opportunity and to put into place a process for moving ALS research to the next level."
"The Robert Packard Foundation is dedicated to funding research efforts that embrace a strategic, multidisciplinary approach to ALS," said Bob Packard, the foundation's founder. "We wanted to help create a center of excellence in research – one with a new model that promotes collaboration among researchers around the world.
"We believe the Center is set up to bring together the best researchers from within and outside of Johns Hopkins to share ideas and strategies in finding therapies for ALS," he concluded.
"I'm very optimistic," Rothstein said. "Over the last five years, scientific methods have become much better, much more promising, in both basic and applied neuroscience. What we are trying to do is to understand the origin and development of ALS, and then convert that understanding to therapies and, ultimately, cures."
Edward D. Miller, M.D., CEO of Johns Hopkins Medicine and dean of the medical faculty, called the Center funding initiative "a near-revolutionary, extremely visionary way of focusing resources to combat one of the least understood and most devastating of human diseases."
Miller noted that approximately one out of 800 male deaths and one out of 1,200 female deaths are due to ALS. "We at Hopkins are justifiably proud and honored to be leading this effort, and we are most grateful to the Robert Packard and Kornfeld foundations for making it possible," he added.
The Robert Packard Foundation for ALS Research, headquartered in San Francisco, is a non-profit, volunteer organization formed in late 1999 to raise money for ALS research within the Bay Area community. The Robert Packard Foundation plans to invest its funds in organizations that are finding innovative, collaborative, and accelerated methods of researching ALS.
The Emily Davie and Joseph S. Kornfeld Foundation, located in New York City, was created by Mrs. Kornfeld, who left a substantial legacy to the foundation upon her death in 1989. The granddaughter of a founder of Standard Oil of New Jersey, Mrs. Kornfeld – known as Jackie – studied at The Royal Academy of Dramatic Arts in London and was an actress for a time on Broadway and London stages, until tuberculosis cut short her career. Mrs. Kornfeld became an active proponent of the individual's right to maintain dignity in the face of illness.
Further information is available on the website for the Center for ALS Research at http://www.neuro.jhmi.edu/Als/AlsCtr.html.