"Aligning the Whole Chain." Behind a Sergey Brin-Funded Parkinson's Research Initiative

Aligning Science Across Parkinson’s, a new research initiative funded by Google co-founder Sergey Brin, has announced its first round of research grants, a sizable $161 million. The grants went to 21 research teams studying the neurodegenerative disease at 60 institutions in the United States and 10 other countries.

The organization, backed by the Sergey Brin Family Foundation—and Brin’s estimated $65 billion fortune—was dreamed up and launched in just the last couple of years. It is Brin’s most recent move to advance the study of Parkinson’s and the development of potential new treatments. Its formation followed what was already more than a decade of substantial Parkinson’s grantmaking from the tech industry titan.

As is the case with many wealthy donors who give big to advance research on a particular disease, for Brin, this cause is highly personal. In 2008, he announced that he carried a gene that elevated his risk of developing Parkinson’s, which also affected his mother and another relative. Since that time, Brin and then-wife Anne Wojcicki (the couple split in 2015), co-founder and CEO of 23andMe, became major contributors to the Michael J. Fox Foundation for Parkinson’s Research.

Aligning Science Across Parkinson’s (ASAP) is interesting, not just because of the substantial dollars to which it potentially has access, but for a grantmaking approach that seeks to understand the entire scientific lifecycle—not just the fundamental science and biology, but also translating that basic science into real-world therapeutics.

A key goal for the organization is the promotion of collaboration across sectors and scientific disciplines, such as biology and data science, but also to better align the needs of the academic research world and needs of industry seeking to further develop potential therapies. This means, in part, support for shareable data resources and tools that can help the entire field advance, and to fund the development of emerging ideas to produce research projects that can compete for the far larger pool of government funding from sources like the NIH in the U.S. and similar funders in other countries.

Leading ASAP is molecular biologist and Nobel Prize winner Randy Schekman, who serves as scientific director, and Ekemini Riley, as managing director. Riley, a molecular biologist who has a background in cancer research, was a director at the Milken Center for Strategic Philanthropy, where she led the planning and development of ASAP before taking on the initiative’s executive role.

“One of our goals is to bring Parkinson’s funders together to collaborate—like investigators, funders don’t always collaborate,” Riley said. “We want to figure out where the white space is to see where philanthropy can bring about ideas and a new way of doing things.”

ASAP’s greatest value with respect to accelerating the development of effective therapies could be in this idea of serving as a kind of objective broker that can understand the entire process of the science, from basic research to approved treatments. “You need someone who can take on the job of figuring out the whole landscape,” Riley said. “Ultimately, you want translations of the science into cures, someone who can find out what the pharmaceutical industry needs and feed that back into the scientific system. The whole chain needs to be aligned.”

ASAP partners closely with the Michael J. Fox Foundation for Parkinson’s Research, the largest private funder of research into the disease, which also administers ASAP’s grants. ASAP has no set budget, so grants may vary from year to year. But Brin’s substantial fortune and strong personal motivation suggest that the organization will be able to fund as much work as it deems important.

The recently announced first round of 21 grants out of ASAP funded work on Parkinson’s-associated genetics and neuro-immune interactions, with 96 lead investigators receiving awards.

As mentioned, ASAP was incubated at the Milken Center for Strategic Philanthropy, which helps individual philanthropists and foundations to develop their giving strategies. Planners considered the entire picture of Parkinson’s investigation, including multiple research directions going on in labs around the world—and the scientific gaps between them.

“We try to understand the state of the science and the state of the system,” said Melissa Stevens, executive director of the Center for Strategic Philanthropy. “When we’re landscaping the field, we look at these areas from 360 degrees—[asking] not just ‘what do the academic researchers say,’ but ‘what does the industry need, and where is the government funding going?’” Through those questions, she said, they can better judge where philanthropy can be complementary.

During ASAP’s two-year incubation phase, planners assessed the state of the science and the disease models, but also factors like the global pool and pipeline of the investigators themselves, the nature and accessibility of the research data, levels of patient engagement in the research, and clinical trials. Those considerations informed the design of ASAP.

This impulse toward global coordination is not a common model for funding organizations, but with so many health issues requiring a nuanced understanding of still-mysterious biological processes, perhaps it should be.