When our son, Brandon, was born in 1971, my wife, Shari, and I decided we needed a backyard. We’d been living in New York City— I worked there as a venture capitalist—but we were drawn to California, where we had met in college. The top-rated schools in the Bay Area community of Lafayette proved to be perfect for our bright son and our daughter, Shannon, who completed the family eight years later. But I’d always dreamed of living in Napa Valley, a place I started visiting to taste wine when I was in business school at Stanford. In 1985 one of the companies I’d financed gave me enough capital to buy a 50-acre vineyard, which had been planted in a fertile stretch called the Rutherford Bench in the twenties, when the great winemakers brought European methods and rootstocks to California.
Brandon and Shannon both helped with the grunt work—it was kind of a shock for us to learn that growing grapes was not romantic—but Brandon escaped to college at Dartmouth, destined to be an astronautical engineer. He was a National Merit scholar with a 4.0 GPA, a soccer star with a great sense of humor: just a golden child. When he came home for the holidays, however, he seemed increasingly distracted and preferred to stay in his room rather than visit friends. We didn’t consider his behavior troubling, though; we knew he was under a lot of pressure to perform well at the Ivy League school, and we thought that somehow we had raised a junior Einstein, an absentminded professor type. We now know he was displaying the classic warning signs of schizophrenia: social withdrawal, trouble sleeping, agitation, anxiety. We also know now that schizophrenia is most likely to strike in the teens or young adulthood. But you have to be educated to recognize this illness.
It was in the summer of 1990, when Brandon was 18 and home from his freshman year, that he had a psychotic break; he was wandering the streets thinking his soul was leaking from his head and feet. Shari and I rushed back from a business trip in Paris to find he’d been picked up by the police and locked in a psychiatric hospital, saying things like “Half of me is missing.” The doctor told us he had a thought disorder. Shari said, “That’s schizophrenia. That’s the worst possible thing, right?” And the doctor said yes.
We had the typical parental reaction to a diagnosis of mental illness: This can’t be our child, our beloved, brainy, accomplished boy. Although we were devastated and bewildered, giving up was never an option, but I guess we were still naïve enough to think of the episode as we would a broken bone—your kid falls down and breaks his arm, it heals, then it’s in the past. That isn’t the way this disease works. With medication and care from terrific doctors, Brandon was able to graduate in 1993 and get a job with an engineering firm in Palo Alto. He was planning to go back for a master’s degree when he had a second psychotic break— a hallucination of a spear stabbing him in the stomach. He couldn’t walk or eat, and although he doesn’t remember it now, he was suicidal, envisioning jumping off a roof or in front of a bus. I’m not entirely sure how our family got through that time, but there was a bit of luck in that I’d sold one company and had not yet bought another, so I could devote myself to him. I went to see him every day, just sitting with him, reading to him, sometimes taking a walk or riding a bike together. With time and the right meds, he began to improve.
Since moving to Napa Valley, Shari and I had been asked to get involved in charitable wine auctions, always for good causes like the symphony or the ballet but never for mental illness. It seemed to be a subject of shame, and we wanted to do something that would both promote awareness and reduce the stigma. From the reading we’d done when Brandon got sick, we knew that scientists were on the cusp of breakthroughs, so we began to think about an event to raise money for research. We’d met the great Chicago chef Charlie Trotter, who said he’d come cook for a fund-raiser, and a conductor friend suggested building the event around music. That’s how the Music Festival for Mental Health was born. Shari had set up a nonprofit organization once before—her degree is in public health, and one of her jobs involved establishing a statewide bar exam for paramedics—so we just slugged through the process and the paperwork. (It’s mostly about satisfying the IRS.) We invited those on our Christmas card list to the first festival, raised $65,000, and donated it to the University of California in San Francisco to fund research.
That was in 1995. Since then we’ve raised more than $80 million for research on the causes, treatments, and prevention of schizophrenia and other mental illnesses. (There’s a lot of crossover between disorders. Since manic depression runs in our family, Brandon was at a higher risk.) The scientific advisory board that makes the grants has been culled from the best medical centers, but Shari and I also go to a lot of conferences ourselves. We’ve got some street cred because we can say we’ve been there and are doing that, as opposed to just saying “This is an important cause.”
The festival has not only great music, food, and wine but also some of the best brain scientists in the world conducting seminars, and people can ask the questions they might feel are difficult or embarrassing. We underwrite all the expenses so absolutely 100 percent of the proceeds go to research. We pay for everything from the entertainment to the window washers. The performers have included Roberta Flack and Beach Boys cofounder Brian Wilson, who is triumphing over mental illness himself, and musicians from the San Francisco Ballet Orchestra play every year. I’m the celebrity wrangler—sometimes I am dealing with demands about the temperature of their Evian water. But the big names are often the most generous; either they get a million dollars or they come for nothing, and I try to get them for nothing. I’m working on Billy Joel for next year. Billy, are you listening?
There are 57 million people in this country with mental illness and they still face enormous prejudice based on ignorance. These are genetic disorders causing chemical imbalances, with some environmental triggers such as stress. We haven’t understood the pathology, but the cure will be uncovered in generestoration therapy. With state-of-the-art brain-imaging and pioneering technologies, 16 candidate genes have been identified. In 2005 we introduced the Rising Star award, a $250,000 grant to help outstanding neuroscientists under the age of 45—we want the youngest, sharpest, hungriest minds doing the problem solving. I think of my supporting these individuals as similar to my work as a venture capitalist: I’m investing in a promising future. Their work has already prevented the horrors of a psychotic break for several thousand clients, people who are benefiting from early intervention and will never have to go through the pain Brandon did, not to mention saving many others, like Shari and I, from the trauma of wondering if they were bad parents, berating themselves for not recognizing the warning signs earlier. Mental illness is almost as harrowing for the people supporting the sick person.
I’ve basically applied the same level of intensity to running a nonprofit that I’ve applied to all other aspects of life. I grew up in an immigrant Italian family (my father changed our name from Stagliano) and I paid for my first car by lifting couches in my father’s upholstery business for 50 cents an hour. He taught me a lot about entrepreneurship, that you create your own rewards with hard work. And my approach to everything is optimistic. It’s part of the reason for my success in business—getting people to believe the impossible is possible, moving prudently because of risk but motivating with will and enthusiasm. That’s what I bring to this party. Nonprofits are often burdened by the perception that they can’t be both aggressive and efficient. People buy their way onto a board for social reasons, and meetings are tedious because everybody has to say something yet nobody has anything to say. Instead of being addicted to activity, I want donors addicted to results. And you have to make sure people understand that dollars are precious. A budget is not to be ignored—it allows you to accomplish your objectives.
Shannon will be getting her MBA soon and will someday take over the vineyard business. Brandon designs our Web site and is involved in the music festival, which he hopes to run eventually. He’s doing incredibly well and was just engaged to a wonderful young woman. There’s an ironic twist in the fact that because of his medicines, he can’t drink wine. Recently Brandon was talking about how he would like to have children but is worried that because his meds make him sleep eight hours straight through the night, he wouldn’t be able to get up to feed or take care of a baby. I wonder how many husbands and fathers worry about that?
Music Festival Stats
The Staglins’ music festival is the world’s leading fund-raiser dedicated to researching the causes, treatments, and prevention of mental illness. Next year’s festival will be held September 12.
Did You Know…
There are almost twice as many suicides as there are homicides in the United States, and the great majority of people who kill themselves suffer from mental illness. And on average people with serious mental disorders die about 25 years earlier than the general population, from all kinds of medical problems.
“Schizophrenia is a chronic illness for about two and a half million people,” says Thomas R. Insel, M.D., director of the National Institute of Mental Health in Bethesda, Maryland. “Unlike heart disease and cancer, it comes on early, usually between the ages of eighteen and twenty-five. What makes it different from other brain disorders is that with something like Parkinson’s, there is a lesion on the brain, an area of cells that have died off. With schizophrenia, we think the lesion is in the brain’s circuitry. It’s more microscopic, at a more complex level.”
For the last century the medical community has defined schizophrenia by the presence of a psychotic episode—hearing voices or having delusional ideas—but that’s akin to defining coronary artery disease by the presence of a heart attack. Now we understand that schizophrenia can be detected well ahead of time. Scientists have begun to define what is called a prodrome (as opposed to a syndrome), a time of subtle changes in the way someone thinks and behaves.
At UCLA’s Staglin Music Festival Center for the Assessment and Prevention of Prodromal States, Tyrone D. Cannon, Ph.D., is using MRIs to identify schizophrenia before the onset of a full-blown illness. At the University of Massachusetts Medical School, Schahram Akbarian, M.D.—the festival’s 2008 Rising Star recipient—is developing techniques to study the chemical tags of protein molecules attached to genes that may be implicated in schizophrenia.