Why This Billionaire Is Racing To Find a Cure for a Rare Neurodegenerative Disease

Billionaire Richard Rainwater, whose business savvy made millions for the Bass Family of Texas, and who later helped install Michael Eisner as CEO at Disney, went to the doctor in 2009 after suffering for months with unexplained health troubles. His symptoms pointed towards something neurological, but no one could crack the code. Finally, a doctor came back with a diagnosis: "progressive supranuclear palsy" or PSP.

PSP is a neurodegenerative brain disease that has no known cause, treatment, or cure. From diagnosis, patients are given four and a half years to live. The disease is fast moving and unforgiving. These days, Rainwater requires 24-hour care.

Here begins a common story in the world of health philanthropy, where the race to find a cure for diseases as well-known as diabetes and as rare as PSP (or neurofibromatosis) is fueled by something deeply personal.

PSP attacks nerve cells in the brain, causing the buildup of a protein called tau. Now, tau in normal amounts is fine, but when the protein becomes overabundant, it piles up in clumps, with devastating results affecting cognition, balance, coordination and vertical eye movement. PSP patients have difficultly looking downward and often suffer terrible backward falls. Over time, physical stiffness progresses, causing slurred speech, a blank facial stare, and trouble swallowing.

Post-diagnosis, Rainwater traveled to Scotland with his wife Darla Moore, a former high-profile banker, where doctors were treating Alzheimers and Parkinson's patients with an experimental drug thought to curtail the build up of tau. The treatment didn't work. Soon after, Rainwater doubled down on his commitment to finding a cure.  With close family and associates at his side, Rainwater organized a new research program called the Tau Consortium.

For the last few years, an international team of scientists at Tau has been attacking PSP on multiple fronts, studying elements of the disease in mice, flies, worms, and human cells—Rainwater’s cells, to be specific. A skin sample from Rainwater has been converted to stem cells for testing existing chemical compounds.

According to Fortune, at least $20 million of Rainwater's $2.8 billion has been committed to this project. While PSP only affects six in every 100,000 people, the build up of tau is also thought to play a role in other degenerative diseases, including Alzheimer's. The research being done Tau could be far-reaching, which is a good reminder that even philanthropy motivated by niche causes can have a broad impact.

It's also worth noting that Rainwater's philanthropic vehicle, the Rainwater Charitable Foundation, recently shifted its attention towards medical research as well. A bit under $1 million has gone out of the foundation in recent years, most of it in education, which has been a priority of the foundation since opening in 1991. Still, medical research has become a focus as well, where sums have gone to the University of Texas Science Center Foundation to support Alzheimer's research, as well as to  the Association for Frontatemporal Dementia.

Looking forward, Rainwater has said that the majority of his fortune will go to philanthropic causes. It's tough to see medical research, research supporting neurodegenerative diseases specifically, not being a priority. A reported $60 million will also go to Darla, who runs a separate foundation which hones in on economic development and education in her home state of South Carolina. There's also Rainwater's children. In filings related to Rainwater's divorce from his first wife, Rainwater's son Matthew listed assets of more than $50 million, some of which could be destined for medical research as well.

Related - Richard Rainwater IP Profile

Related - IP's Profile of Rainwater's Texas Giving