Four years ago, Michael Rancer, an administrator at the University of California, Berkeley, lost his son to familial dysautonomia, a rare genetic disorder found among Ashkenazic Jews that causes the nervous system to deteriorate. Today, Rancer is one of the prime movers behind a proposed new center for Jewish genetic diseases in San Francisco that is expected to open by the end of the year.
“It would be the only center west of the Hudson River that would be comprehensive,” Rancer said. “It would not just do testing and screening and patient care, but education, outreach and clinical and laboratory research, as well.” It would, in fact, be the only center dedicated to Jewish genetic diseases, in any capacity, west of Chicago.
Around the time of his son’s death, Rancer learned that a screening test for F.D. had become available. So he went to speak with Dr. Seymour Packman, director of the University of California, San Francisco Stanford Lysosomal Disease Center, which focuses on a class of genetic diseases that includes some of those for which Ashkenazic Jews are at greater risk, although not F.D. “We had a number of conversations and we said, ‘What about a Jewish genetic disease center?’” Rancer recalled.
The new center, like the Lysosomal Disease Center, will be a joint project of the University of California, San Francisco and Stanford University. No new construction is needed, as it will draw on the offices, labs and pool of researchers and clinicians already working at both universities. According to Rancer, an initial three-year program has been laid out with a $4 million budget. Rancer has embarked on fund raising, approaching foundations, he said, that have a history of supporting medical research, UCSF and Stanford. The proposed center also hopes to capitalize on California’s new $3 billion stem-cell research program.
Packman is director of Biochemical Genetics Services at the UCSF half of the Lysosomal Disease Center and will serve as medical director of the Jewish genetic disease center along with his counterpart at Stanford, Dr. Gregory Enns. He described the center as a unique venture because it puts “in one package” a number of medical subspecialties. In addition to the geneticists and genetics counselors usually
available at such centers, Packman foresees collaborating with all departments, from cardiology to gynecology to psychology, according to patient and research needs.
“The funding is really to support several things,” Packman said, including two genetic counselors at each university, clinical and lab research, community outreach, and physician and patient education.
Packman also emphasized that by serving Northern California, the center will be serving a significant portion of the American population over a wide area. Northern California contains 5% of the U.S. population and, in square miles, is almost the size of New England and New York state combined. “We are talking about reaching communities and physicians who are up to eight hours away,” he said. “Our raison d’être is not the testing. Someone may be tested in Eureka, but we want to be the single center where someone comes to us for comprehensive care: diagnosis, counseling, research.” Ultimately, Packman and his colleagues hope the new center will serve the entire Pacific Northwest.
“There are one million Jews living in California today,” Rancer said, “more than anywhere in the U.S. besides New York.”