(Pictured) Eden, Randy and Caroline Gold’s daughter, who was diagnosed with ML4 at 18 months
We had been sitting in a conference room together, me and 24 medical researchers from 16 universities and various departments at the National Institutes of Health, for two extraordinary days. As an accountant, I was in over my head, but as a father and board member, nothing could keep me from my responsibility to my daughter or to the Mucolipidosis Type IV (ML4) Foundation. You see, ML4 is the devastating Jewish genetic disease that afflicts my beautiful five year old daughter, Eden who was diagnosed with ML4 at only 18 months. Doctors say that children with ML4 will likely never walk, never talk, will have a maximum mental capacity of 18 months, will go blind by the time they are 12 and will only live until early adulthood.
This gathering, convened by the ML4 Foundation, was the first scientific conference setting an agenda to cure this horrible disease. Each of the brilliant researchers present were eager to be in the room; indeed, the meeting had been arranged largely because Dr. Rebecca Oberman, Executive Director of the ML4 Foundation, recently hired and eager to meet the needs of the research community, realized from conversations with the scientists that this meeting was long overdue. “Lock us in a room for two days,” one Harvard scientist begged her, only half-jokingly, “and force us to share information. Only then can we find a cure.”
Yet, because the scientific processes is highly competitive, a deep tension was present from the inception of the conference idea: in order for this meeting to have any significance, in order for it truly to hold the potential for bringing new information to the forefront and allow the researchers to forge a fresh pathway toward a cure, each one would have to present all that he or she knew, including unpublished data, provisional findings, and the very sorts of privileged information that laboratories typically keep secret from each other. In asking each lab to present that which makes it unique and competitive – that which is typically saved for a precious NIH grant application against which they compete for scarce and dwindling resources – we raised a question at the core of scientific practice and, I would venture, Jewish communal work: will you buck the common tide and act against self interest to serve the common good?
As I sat in that room, watching in sometimes tearful astonishment as each researcher indeed, shared critical findings and probed each other’s work to collaborative ends, I thought about how we see this tension play out in our own Jewish communities all too often. Each of our communities are beset with examples of too many reproduced programs; lack of shared resources, whether in material, personnel, or intellectual capital; skyrocketing costs of a Jewish day school education; and struggles to ignite a flame of passion for Judaism. We have all experienced the competition for fundraising dollars or the allocation of resources from Federation annual campaigns to be shared among multiple organizations each with many important and significant needs. We have seen schools competing for students and communal favor or synagogues vying for relevance. Not to mention, the tension among our brethren of different religious denominations who each say the same words of the Shema. Instead of gaining ground, often we find ourselves limited by our organizational strictures which only serve to dampen innovation.
Knowing the immense effort to coax scientists into bringing ever more open and collaborative data to the conference, I was inclined to think that the very structures of science were at fault: that these labs and scientists were encouraged to behave as isolates working against each other for their own distinct purposes. And yet, the more conversations developed among this group, the more aware I became that these scientists are truly a deeply woven community who are often fractured by the practices which push them into competition. Great innovation—of the kind needed to cure my daughter and the kind needed to make our Jewish communal work soar—doesn’t depend on solitary organizations competing against each other. In fact, it is the exact opposite. Can we as a Jewish community check our organizational identities, fundraising egos and religious desires at the door of the Jewish communal conference room?
We are well reminded by Kohelet that “Two are better than one, for they get a greater return for their labor. For should they fall, one can lift the other; but woe to him who is alone when he falls and there is no one to lift him!” In my heart, this is not only my greatest wish for the scientists I sat with and whom I will support until we find a cure, but for all of our communities as we strive to find collective ways to strengthen and build partnerships for the needs we serve.
Randy Gold, an Atlanta 05 Wexner Heritage Alumnus, was named the Jewish Federations of North America 2011 Jewish Community Hero for founding, along with his wife Caroline, Jewish Gene Screen to promote awareness of the need for screening for 19 known preventable Jewish Genetic Diseases. Randy is also a driving force behind the efforts of the ML4 Foundation to find a cure for his daughter Eden and other kids like her. Randy can be reached at randy.gold@aghllc.com.
