Dr. Herbert Pardes on How BBRF Was Founded and Its Importance in Advancing Psychiatric Research

In his recently published memoir Because the Next Patient is Waiting, Dr. Pardes told the story of his remarkable career, stressing the compassion and humanitarian concern that were always, for him, “at the heart of medicine.” In an Afterword, he left us with concrete ideas about how to improve healthcare in America, with a stress on integrating the care of mental health with general medical care, more compassionately treating serious mental illness, and devoting special attention to preventive care, including mental health care, especially for new mothers and their children. In the book (written with Peter Tarr, BBRF’s chief science writer), he also made a vigorous case for investing generously in research. In one chapter, excerpted here, Dr. Pardes explains how through the formation of BBRF, citizen philanthropy was directed to the cause of advancing research on the brain and psychiatric illness—a cause that was close to his heart and which played a central role in his life.

After leaving my post as Director of the National Institute of Mental Health (NIMH) in 1985, having served for 5 years under presidents Carter and Reagan, I wanted to find new ways to make clinical psychiatry more effective for people who needed it most. I also wished to follow up on projects in which I had been involved while still at the NIMH. One favorite of mine had to do with developing collaborations with citizens, to secure more vigorous advocacy and also more patient-inspired philanthropy for psychiatric patients and programs.

In 1979 I had been invited to a meeting in Madison, Wisconsin held by a group of parents of people with schizophrenia. “What if we had a family advocacy group that worked for mental illness causes?” they asked. I thought it was a great idea. Other such advisory groups had been working for some time on behalf of the victims of other illnesses, including cancer, diabetes, muscular dystrophy, and heart disease. There was no substantial advocacy group for people with mental illness. For obvious reasons: most patients were not able to advocate, either because of incapacity, few resources, or a fear of being stigmatized. Also, most people without experience with mental illness often figure they will never suffer from one—though they do fear developing cancer, heart disease, or Alzheimer’s.

I felt the time was ripe for a partnership between people in my profession of psychiatry and the public. I thought it would be important in the years ahead to have in place another source of funds to complement the essential role played by government. Research on mental illness was funded almost entirely by the government at this time. There was little private or philanthropic role. As for the funding by government, mental illness was certainly not receiving its fair share. For every American with cancer, $300 was spent annually on research in 1986. The comparable figure for people with schizophrenia was a mere $7.

I thought we could make a serious dent in stigma by bringing families into the picture on a national scale. The group that emerged from that 1979 gathering in Madison did just that. It was called the National Alliance for the Mentally Ill, or NAMI. With satisfaction, I observed its impact increase over time, energized by effective leaders such as Laurie Flynn, who guided the organization through the end of the 20th century, and augmented by the important support of Dr. Fuller Torrey.

After NAMI had been functioning for a while, they raised the question: “Shouldn’t we launch a private organization that would be dedicated to the support of research, to complement the citizen’s advocacy group?” I agreed. At the beginning of this effort, the core group consisted of several leaders from NAMI and a group from Kentucky including Phil Ardery and Boz Todd called the Schizophrenia Foundation. Together, NAMI and the Schizophrenia Foundation formed NARSAD, the National Alliance for Research on Schizophrenia and Depression. It was led initially by Gwill Newman, a wonderful advocate and leader whose life had been jarred by the tragic death of her son who had been afflicted with mental illness.

With help from Katharine Graham, the owner of the Washington Post, a first-rate scientific advisory panel for NARSAD was formed, naming me its president 1986. Little did I know then that the Scientific Council’s work would be one of the great professional and personal experiences of my life. Over more than 36 years, NARSAD, which in its first year debated launching a grantgiving function with the $50,000 it then had in hand, built itself by recruiting to the Scientific Council top leaders in all aspects of neurobiology, neuroscience, clinical research, psychology, psychiatry, and other allied fields. The Council now has some 190 members. The Foundation, renamed the Brain & Behavior Research Foundation (BBRF) in 2011, to date has awarded some 6,500 grants worth over $450 million to the very best scientists all over the world working on mental illness. Many of them are just starting out and in greatest need of external support. From early days, “having a NARSAD” grant became a mark of distinction, something academic researchers boasted about, in part because the grants are thoughtfully awarded by experts in the field.

THE MULTIPLIER EFFECT

The institutional history of BBRF teaches some important lessons. One of the advantages is the multiplier impact of effective grant giving. Over 80% of BBRF’s 6,500 grants awarded to date have had the unique purpose of jumpstarting careers of young researchers demonstrating unusual promise. Although a proportionately smaller number of the grants sought to sustain proven mid-career scientists and to provide senior, distinguished scientists with funds to pursue highly novel or risky research (often marking a departure from the work they’ve already accomplished), the over 5,100 grants so far awarded to Young Investigators have probably had the greatest impact. Although the dollar amounts are modest (now $70,000 over 2 years), these early-career grants have been the equivalent of seed funding. They have enabled the best and brightest entrants to the field to perform research which, when successful, facilitates their scientific career, in part by providing a basis for multi-year, career-sustaining federal grants.

Federal granting agencies do not take the same risks as an organization like BBRF in the current funding environment. This is one of the key lessons of private philanthropy, pursued intelligently. The general scarcity of research funds has resulted in increased competition for a steady or sometimes shrinking pot of money. This, in turn, has encouraged federal grant administrators and review committees to select projects that are comparatively safe. BBRF expects positive results, but accepts projects that are riskier. Seeding such projects has often led to disproportionately high rewards— “breakthrough science.”

To cite one of many examples: the Scientific Council issued a Young Investigator award in 2005 to a young man from California named Karl Deisseroth. A practicing clinical psychiatrist with an M.D., Karl is also a brilliant Ph.D. neuroscientist in a faculty position at Stanford. With BBRF’s seed money, he was instrumental in spawning an entirely new technology, called optogenetics, which enables researchers to use beams of colored laser light to switch individual neurons on and off—painlessly and reversibly— in living, “behaving” mice. This, in turn, has enabled his team and hundreds of others across the world to make new discoveries about the neural circuitry involved in schizophrenia, depression, epilepsy, and other brain disorders. Karl was co-winner of the Lasker Basic Medical Research award in 2021 for his part in the development of optogenetics.

Karl began to innovate on BBRF’s dime, and while most of his discoveries have since had the benefit of being backed by much more abundant federal aid, we can’t be certain he would have had the chance to secure that aid as rapidly as he did if he had applied for a federal grant when his ideas were still untested. Dr. Deisseroth is a prime example of a scientist awarded small grants with potentially powerful multiplier effects. He himself now mentors other brilliant young people in his Stanford lab, a number of whom have independently and on their own merits won their own BBRF seed funding. Karl was barely 40 years old when he was elected a member of the BBRF Scientific Council. In recent years, one of the BBRFsupported researchers in Karl’s Stanford lab, Vikaas S. Sohal, M.D., Ph.D., has himself achieved success that has enabled him to launch a very successful lab of his own and merited his election, at an even earlier age than Karl, to BBRF’s Scientific Council.

REDUCING STIGMA

What impresses me about BBRF’s private philanthropy is how well it enables donors and scientists to interact for maximum mutual benefit. When the Foundation began issuing grants in 1987, I was in the second year of my first post-NIMH position at Columbia University, as chair of the University’s psychiatry department. In concert with BBRF (then still “NARSAD”), we decided to hold public conferences— all-day seminars—on mental illness, and invite the public to attend. We found it important for non-professional people to better understand what was going on in the field. It would put us in a better position to raise funds and to perform what we regarded as a desperately needed public service. The more people knew and understood about the biological basis of mental illness, the more “mainstream” the illnesses would become. Our biggest hope was that such enlightenment would lessen stigma, and equally important, lead more people to get treatment.

All this sounded wonderful. The day arrived for our first “mental health symposium,” in Manhattan. It was a rainy Saturday morning. I worried attendance would be disappointing. But 700 people showed up. It was a spectacular success, and marked the beginning of a series that has continued and is stronger than ever today, decades later. Those of us who gave talks that first day could feel the hunger in the audience to hear us. They wanted to learn more about a subject that occupied so much of their lives and yet was rarely spoken about in public. Speakers and audiences alike understood we were doing something important that rainy Saturday.

CONNIE AND STEVE LIEBER’S INDISPENSABLE CONTRIBUTION

It proved to be an important day for BBRF’s future, too. After the symposium ended, a couple came over to me and said simply, “We’d like to do something for mental illness.” I sensed that their interest in research went beyond just one institution, but was for the whole field. These volunteers, Steve and Connie Lieber, had a daughter with a psychiatric disorder and wanted to get involved. It was a stroke of extraordinary good fortune. Subsequently, Connie for 20 years served as president of the Foundation. After her retirement in 2007, Steve carried on in her place, and was Board Chairman of BBRF at the time of his passing in 2020. Connie, who passed away in 2016, was a giant in mental health and a woman of great intelligence and compassion as well as extraordinary modesty. The Liebers helped us award those first 10 NARSAD Young Investigator grants in 1987. Our existing financial assets of only $50,000 were obviously insufficient, but our Board, stimulated by Steve and Connie, urged us to issue the grants at the levels we intended, assuring us that they, the Liebers, would make up the difference. After Connie Lieber became the organization’s head, she meticulously built the organization that administered the grants, and kept at it with the vigor of a 25-year-old for two decades.

The success of the organization is largely due to this extraordinary couple. They wisely let the Scientific Council handle the science decisions while they directed the Board of Directors and made BBRF one of the most friendly and supportive private research institutions active anywhere. Their family, and others, agreed to cover the administrative costs, so that all the funds raised from the public could be devoted exclusively to research grants. We on the Scientific Council all agreed to fund high quality research around the world from any scientific discipline with the primary criterion being the quality of the research and its pertinence to mental illness. Connie and Steve, whom I miss terribly, were the most selfless, wise, and generous leaders I encountered in all my years in mental health. And we now know that their gifts run in the family. Geoff Simon, Steve’s nephew, immediately demonstrated, upon assuming the role of Board Chairman after Steve’s passing, both his aunt and uncle’s dedication to the cause and talent for inspirational leadership. Geoff cares deeply about the mission, and his ability to connect with people and to make the case for the Foundation has delighted all who care about BBRF.

My central point in discussing BBRF’s philanthropy is that from the beginning, the Liebers and other major donors understood that scientific competence in the organization resided in the Scientific Council. They consistently deferred to our judgment regarding grant-making. Members of the Council assess the annual applications. No additional politics comes into the process, and everything is done on a volunteer basis. I removed myself from any involvement in the review and awarding of grants. The BBRF Board and the professional staff under the Liebers brought in money. We were able to fund the best research. This in my experience is the only the way to go in disbursing funds for scientific work. Between fund-raising and grant-making there should be a wall as inviolate as that between church and state.

A FEW OF THE PEOPLE ON BBRF’S SCIENTIFIC COUNCIL WHO HAVE MADE A DIFFERENCE

During the more than 36 years I’ve had the honor of leading BBRF’s Scientific Council, I have had the opportunity to observe and know intimately many of the hundreds who have served this body as volunteers—as I have said, leaders in their fields and subfields. I think it is true that the Foundation has, as my Columbia colleague Eric Kandel has suggested, “seeded the field” with investigators who have helped to chart a course for contemporary brain research. I’d be remiss if I did not mention here just a few of the people I have known well through my association with the Foundation. More people should know about them.

Dr. William T. Carpenter, a pioneering psychiatrist and researcher whose work on schizophrenia and on symptomatology— classifying symptoms in ways that help us treat patients—was present at the creation of the original NARSAD organization. I have turned to Will innumerable times for advice and counsel that I have found, consistently, to be indispensable.

Dr. Frederick T. Goodwin, also a founding Council member, who, beginning in 1981, was Scientific Director and Chief of Intramural Research at the NIMH, made an especially important contribution when he led a study showing that lithium was significantly more effective than other widely used mood stabilizers in protecting against suicide in those with bipolar disorder. My dear friend Dr. Jack Barchus was there from the beginning—a brilliant leader of academic psychiatry departments, and an important researcher who has made vital discoveries regarding neurotransmitters such as serotonin, melatonin, epinephrine, norepinephrine, and dopamine, among others. Jack for many years spectacularly led the BBRF Scientific Council committee charged with selecting Distinguished Investigators. Another marvelous friend of longstanding is Dr. William E. Bunney, Jr. “Biff” Bunney was the very first of the BBRF Lieber Prize winners—investigators recognized for their important work in schizophrenia research. Dr. David Shaffer was for many years the Irving Philips Professor of Child Psychiatry & Professor of Psychiatry and Pediatrics and Chief of the Division of Child and Adolescent Psychiatry at Columbia. A BBRF Distinguished Investigator, David was awarded BBRF’s Ruane Prize for Outstanding Achievement in Child & Adolescent Psychiatric Research. This was well-deserved: he was a pioneer in the study of suicide and was lead investigator in developing the Children’s Global Assessment Scale (C-GAS). He led a team of colleagues in developing and modifying the Diagnostic Interview Schedule for Children (DISC) and the Columbia Teen Screen, standard diagnostic tools used the world over to identify and assess young people at risk for suicide. Dr. Francis S. Lee has approached the problem of youth mental health from another angle. Francis, a Council member who now chairs the psychiatry department at Weill Cornell, has applied his skills as a neurobiologist and psychiatrist to learn more about the molecular basis of mood and anxiety disorders, with the goal of understanding why many of these disorders emerge during the transition from childhood to adolescence.

Dr. Judith L. Rapoport is a notable winner of BBRF’s Ruane Prize, a BBRF Distinguished Investigator and a member of the Scientific Council. As chief of the Child Psychiatry Branch at the NIMH, Judy has been a pioneer in studying and treating childhood-onset schizophrenia, ADHD, and OCD. It is relevant to note that years ago it was felt by most experts that such illnesses (as well as depression) did not occur in childhood. We know better now. Additionally, Judy harnessed the tools of genetics and genomics, following completion of the Human Genome Project, to unlock the mysteries of pathology and causation in a number of psychiatric illnesses.

Another pathbreaker is Dr. Dilip V. Jeste, who brought to our attention the special issues of aging for those with psychiatric problems, notably including schizophrenia and depression. A past president of the American Psychiatric Association and a BBRF Distinguished Investigator and Scientific Council member, Dilip has helped the public understand the problem of what he has called “an epidemic of loneliness” in contemporary society. He has notably developed a body of work on the therapeutic concept of “wisdom,” which he defines as pro-social behavior (i.e., empathy or compassion); emotional regulation; self-reflection; acceptance of uncertainty and diversity of perspectives; the ability to be decisive; the ability to give appropriate advice and support to others; and spirituality.

Two long-serving members of the BBRF Scientific Council immediately come to my mind when I think of research on therapeutics. Dr. Herbert Meltzer, a founding member of the Council, performed vital research demonstrating that clozapine, the first of the “secondgeneration” antipsychotic medicines, was both effective in reducing psychotic symptoms, and, importantly, in reducing suicidality in patients. This was a signal contribution—and here I do not even mention Herb’s dedication for years in helping the Scientific Council to identify the best young researchers worthy of receiving the organization’s Young Investigator grants. Dr. Robert Freedman, who was a distinguished chair of Psychiatry at the University of Colorado, is one of the few researchers who has developed a preventive measure for serious psychiatric illness. Bob and his team, after conducting basic research for many years supported in part by BBRF grants, discovered that the nutrient choline, deficient in the diets of many pregnant women, if supplemented during pregnancy, can reduce the risk of serious mental disorders in the child. The work is still ongoing. This is a very hopeful discovery which can be implemented readily and cost-effectively. The possible benefits are reductions in risk for psychosis and schizophrenia, and possibly other illnesses.

A special expression of my gratitude is due Dr. Jeffrey Borenstein, who for the last decade has expertly led BBRF as its president and CEO. Jeff has brought great credibility to BBRF and its mission by virtue of his long experience as a practicing psychiatrist who is also a leader in the profession. He has proven to be a wonderful communicator, making the case for philanthropy’s essential role in keeping research moving forward. Jeff developed and hosts the television series Healthy Minds, which for nearly a decade has been seen on PBS stations across the United States. I know of no other regular television series in America that has chosen mental illness and mental health as its prime subject, and Jeff has used the opportunity to explain illness, convey the promise of ongoing research, and, perhaps most important of all, transmit the message of hope. BBRF has been fortunate to have a person with Jeff’s gifts and great empathy and kindness at the helm of the Foundation.

The peril is obvious in recognizing the importance of individuals such as the several I have mentioned in the paragraphs above: I have only scratched the surface. The list and the appreciations could go on for many more pages. Elsewhere in my memoirs I have written of the contributions of others: Dr. Aaron Beck, who developed cognitive behavioral therapy which has helped millions; Dr. Daniel X. Freedman, my excellent friend in academic medicine who provided so much sage advice; Dr. Gerald Klerman, a brilliant administrator in the federal government and a superb researcher and dear friend; Dr. Myrna Weissman, who has made a great contribution to epidemiology and our knowledge about the special risks that depression poses for women and their children…. There are so many others I want to tell you about. One of the thrills of my career has been to know some of the people who have taken psychiatry and our understanding of the brain and mental illness from what it was when I was trained to what it is today. These research and clinical innovators have helped to change the game. They and those they now train to carry the work forward have inspired and motivated me.

Written By Herbert Pardes

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