How Personal Tragedy Shaped a Major Funder of Neurodegenerative Disease Research

IMAGE: YURCHANKA SIARHEI/SHUTTERSTOCK

The late Richard Rainwater, a Texan who made a multibillion-dollar fortune through a range of canny investments from oil to the Walt Disney Company, had long been an active philanthropist, highlighted by the creation of the Rainwater Charitable Foundation (RCF) in 1991. For a decade and a half, the foundation focused on initiatives for children and their education.

But in 2009, Rainwater was diagnosed with a very rare and incurable neurodegenerative disease called progressive supranuclear palsy (PSP). He added another focus to the foundation’s mission: support for research into the broader family of related so-called tau protein brain disorders, or tauopathies, which includes primary tauopathies like PSP and secondary tauopathies like Alzheimer’s—more than 20 conditions in all. Rainwater assembled a team of physicians and researchers from around the world to study tauopathies and to develop treatments.

Sadly, Richard Rainwater passed away in 2015. But in the decade since its entry into this branch of medical research, RCF has funded many studies on tauopathies—and developed an international consortium of scientists working to more efficiently develop research strategies and create the tools and models needed to advance that research.

According to the foundation, it has invested about $100 million in Tau protein research so far, making it a leading funder in the field. Since founding the Tau Consortium in 2009, RCF provided about 65% of all U.S. philanthropic funding for tau-related research, including 75% of all U.S. philanthropic funding for treatment development. Key to its efforts, the consortium’s programs include twice-yearly Investigators’ Meetings—the most recent meeting was, of course, virtual.

“The Tau Consortium is a meeting space where the best people in the field can get together to share data and ideas,” says Jeremy Smith, RCF president. “It’s grown in size each year, with more scientists collaborating together, even though only a small percentage receive funding from Rainwater.”

The Tau Consortium has attracted several partners and participants from philanthropy and the research community, including the NIH, the Alzheimer’s Drug Discovery Foundation, Chan Zuckerberg Initiative, Michael J. Fox Foundation, the Concussion Legacy Foundation and the Milken Institute, among others.  

The study of tau proteins is still a relatively young field, and was even younger when the Tau Consortium was established, notes Amy Rommel, scientific program director at RCF. So the foundation started out by funding the sort of early-stage ideas that typically have a hard time attracting public grants, but that philanthropy is particularly good at supporting. After a decade, RCF’s support has enabled more tau researchers to develop their work to the point that they’ve won the NIH and other large government grants needed to gain a better understanding of the disorders and start moving toward cures.

“Now,” says Rommel, “we are becoming more intentional about funding decisions and are doing a lot of analysis of the field to determine where there are gaps in funding. We’ve zeroed in on filling those gaps in the study of tau proteins—even to answer very basic questions, such as ‘What is tau actually doing?’ We still don’t know that answer.”

In 2018, RCF also established the Rainwater Prize Program for top tauopathy researchers—separate from the foundation’s research grantmaking. Recently, the foundation announced the award of a $400,000 prize to Dr. David M. Holtzman and Dr. Celeste Karch at Washington University in St. Louis for their research into understanding and treatment of tauopathies.  

Among the key takeaways here is the importance of building a vastly more connected ecosystem of collaboration throughout research communities. As the RCF’s Smith says, collaboration is a requirement of its tau research funding. And as we’ve written in recent years—and even in recent weeks in discussions of the advances in COVID-19 research that came about through broad cooperation—nationwide and international collaboration and transparency are increasingly a priority for science funders. It’s likely the only way to solve thorny and complex problems, from cancer to climate.