The nightmare of PSP
Even after retreating from dealmaking, Rainwater wasn't through making Texas-size wagers. In December 2005 a Fortune story, "The Rainwater Prophecy," reported that the billionaire, anticipating a catastrophic oil shortage, had gone long on energy stocks and oil futures, to the tune of several hundred million dollars.
To those who knew Rainwater, this play was somehow ... different. In Fortune, Rainwater vented his concern about "the survivability of mankind." He worried openly about sounding like a nut, but he had Moore install an emergency generator and 500-gallon tanks for diesel fuel and water on her South Carolina farm, just in case.
As it happens, like most of Rainwater's bets, this one paid off. Energy prices climbed, and Rainwater, deciding that a crisis wasn't imminent, unloaded his holdings for a handsome profit. But looking back, Moore wonders whether this fixation wasn't an early sign of her husband's disease, given that obsessiveness, loss of inhibition, and mood swings are among the psychological effects of PSP. (Rainwater wouldn't be diagnosed until three years later.)
Progressive supranuclear palsy is a riddle wrapped inside a nightmare. The disease is rare, striking about six people in 100,000, usually in their fifties or sixties. Frequently misdiagnosed as Parkinson's disease, it wasn't even identified in medical literature until 1963. Its cause remains unknown, and its effects are devastating.
PSP attacks nerve cells in the brain, causing something called tau -- a protein that is part of the normal neuron infrastructure -- to pile up in clumps. The resulting destruction impairs mental processing, balance, coordination, and vertical eye movement; two hallmarks of the disease are difficulty looking downward and terrible backward falls. Physical stiffness progresses, causing slurred speech, a blank facial stare, and trouble swallowing.
Worst of all for the patient, there's a painful lag between the deterioration of the brain and the body. Awareness, memory, and thoughts remain largely intact, often bottled up by an inability to wield them. "People are locked out of expressing," says Dr. Joel Kramer, a neuropsychologist and co-founder of the UCSF dementia center. Over time the dementia worsens. Patients become virtually helpless. Most die from choking, suffocation, or pneumonia.
In March 2009, when Rainwater was diagnosed in San Francisco, there were no treatments for PSP. Rainwater characteristically began scouring the Internet for hope; he found little comfort.
"I'm dying, Precious," he told Moore.
"We all are," she replied. "No one can tell you when you're going to die."
Accompanied by Dan Stern, Rainwater and Moore traveled to the University of Aberdeen in Scotland, where doctors were treating Alzheimer's and Parkinson's patients with methylene blue, an experimental drug. Rainwater began taking the medicine, which was thought to combat the buildup of tau, but it didn't help.
Around that time, Rainwater's family began organizing a new research program. Later named the Tau Consortium, it was a classic Rainwater-style deal: creative, ambitious, risky, and collaborative.
Moore and Stern asked Miller and Kenet to round up a medical dream team that Rainwater would bankroll. About 25 experts from around the world, ranging from bench scientists to clinicians, gathered in New York City in May 2009 for a three-day meeting to organize a research program. The group, which includes a Nobel Prize winner, has met four times since to share their findings. "I don't think there's ever been such a broad group of people focused this way in science," says Miller. "It has a Manhattan Project quality to it."
The scientists are attacking PSP on multiple fronts, studying elements of the disease in mice, flies, worms, and human cells -- Rainwater's cells, that is. Skin taken from Rainwater's leg -- presumably containing markers of his particular disease -- has been converted to stem cells for testing existing chemical compounds. If lab work shows promise for halting the accumulation of tau, an experimental treatment would be rushed into the clinic -- with Rainwater as the first patient.
As personal as all this seems -- with more than $20 million committed so far to try to save a single dying man -- it is, in actuality, far more likely to help others. Though they are widespread, brain diseases attract little private funding because progress is so difficult; they're regarded in the philanthropic world as a black hole. Rainwater's spending is "one of the most significant investments in dementia research by an individual ever," says Miller.
The research funded by the Tau Consortium assumes that tau is the cause of disease, not merely a byproduct, although that issue remains a subject of scientific debate. Abnormal tau clumps are also present in Alzheimer's patients. This means that Rainwater's initiative could contribute to treatments for them too. Says Miller: "We believe tau is the holy grail of dementia. This has broad implications. Treatment for Richard will be a treatment for the world." He acknowledges, though, that finding a cure in time for Rainwater will be "very difficult."
