These are exciting times for Parkinson’s disease research, driven in large part by a relatively new philanthropic force, Aligning Science Across Parkinson’s (ASAP). The organization was established in 2019 by Google cofounder and centibillionaire Sergey Brin, who in recent years has become a major funder of research into the disease, reportedly injecting more than $1 billion into the field. But ASAP is designed to do more than supply grants: Its broader aim is to help expand, and, most importantly, to coordinate global research into the disease.
The latest news from ASAP is a $20.4 million grant to the Parkinson’s Foundation, which has itself been a key philanthropic supporter of Parkinson’s research and treatment for decades. In one of its most important programs, the Parkinson’s Foundation has been collecting genetic data from thousands of patients for years under its international genetics study, PD GENEration: Mapping the Future of Parkinson’s Disease. The new grant will let the foundation significantly expand PD GENEration, both in terms of patient numbers and diversity, extending the study’s reach to countries in Latin and South America with a focus on populations that have been historically underrepresented in medical research.
“In any genetic study, the diversity of your patient population gives you more information,” said John Lehr, president and CEO of the Parkinson’s Foundation. “Genetics offers one of the fastest and quickest pathways to new and better therapies.”
This is actually addressing an issue that goes far beyond Parkinson’s disease. Medical research over the last century has overwhelmingly focused on white men, resulting in gaps in the science and gaps in what we know about treating patients from other demographics. In recent years, research funders and institutions have at least voiced the desire to ensure that women and people of color are fairly represented in the research, although there’s still a long way to go.
Meanwhile, it was only in the 1990s that researchers realized there was a genetic component to Parkinson’s. In the years since, several Parkinson’s-related genes have been identified, but the genetic causes of the disease are not fully understood. Expanding the gene-mapping study is expected to help scientists sharpen their understanding of the disease and its genetic components and to speed the most important outcome: the development of new treatments. Already, a number of pharmaceutical companies are testing therapies targeting some of the common genetic mutations in Parkinson’s, Lehr said.
Since it started up in 2019, ASAP has been invigorating Parkinson’s research through new grants powered by Sergey Brin’s wealth. As one of the richest people in the world, Brin has virtually unlimited philanthropic horsepower at his disposal, and he’s been ramping up his giving lately. In 2022, the Sergey Brin Family Foundation’s giving more than doubled to $512 million, a grant outlay comparable to that of the Walton Family Foundation.
Parkinson’s giving remains Brin’s signature cause, and as is often the case with medical research mega-donors, there’s a personal element in play here: Brin’s mother and his great-aunt were both diagnosed with the disease. Along with his mother, Brin himself shares a mutation in the LRRK2 gene that “accounts, in some ethnic groups, for a substantial proportion of familial Parkinson’s,” he wrote in 2008. Besides ASAP, Brin’s Parkinson’s funding includes major support for places like the Michael J. Fox Foundation for Parkinson’s Research, the Milken Institute and University of California San Diego.
Building the field
But as interesting as the sheer dollars it’s deploying is ASAP’s goal to coordinate Parkinson’s research globally — all in an effort to speed the development of treatments. That’s the “aligning” part of “Aligning Science Across Parkinson’s,” an integral part of what the organization initially set out to achieve.
“We took the opportunity to think about how to build our infrastructure and facilitate collaboration among grantees and across funders to make sure we’re bringing alignment to the whole space,” said Ekemini Riley, managing director of ASAP. “It’s an attempt to think holistically about science writ large, and to bring efficiency to the space,” Riley said. “If we want to go far, we need to go together. But how can we go together to go fast? How can we fail fast and learn what doesn’t work, and move forward to find things that do work?”
While creating an overarching research roadmap might seem to make sense in almost any field of medical science, it’s actually not that common in the broader scientific community, in which labs operate fairly independently. But it may be gaining steam. For example, in 2022, Brin and several other big donors partnered to launch a new funder called BD2 (for “Breakthrough Discoveries for Thriving with Bipolar Disorder”) to accelerate and coordinate study of bipolar disorder — another complex condition that has proved difficult to understand or treat.
Ending “parachute science”
Built into ASAP’s goal of getting Parkinson’s researchers to row more or less in the same direction is the desire to support the development of scientists and labs in countries where Parkinson’s research is scarce, Riley said. It has been common for years for scientists from the U.S., Europe and other wealthy countries to practice what’s been dubbed “parachute science” — dropping into other countries, conducting research and collecting biological samples, and returning home to work on studies, publications, discoveries, and possibly valuable patents.
“You have investigators from the Western world who engage populations abroad, gather patients and take their material, then go back home and do their research and generate data,” Riley said. “But they’re not necessarily involving the scientists in that country or pouring benefits back into the place from which they generated their discoveries.”
People with Parkinson’s are ready to see some progress. Some 90,000 new cases of Parkinson’s are diagnosed each year in the U.S., making it the second-most common neurodegenerative disease behind Alzheimer’s. As far as therapeutics go, Parkinson’s has hit a medical brick wall. There’s essentially only one drug for the condition, levadopa, which has been in use since the 1970s. It improves tremors and other symptoms significantly but doesn’t cure or slow progression of the disease. With funding from Brin and others powering expanded genetic research into the condition, hopefully, that status quo will soon change.
