Situation
With more than 6 million cases worldwide, Parkinson’s disease (PD) is the most common and fastest-growing neurodegenerative condition. Currently, there are no treatments that can slow or stop the relentless progression of the disease. Millions lack a meaningful therapy to treat its underlying cause, and considering the immense burden of the disease, PD research remains woefully underfunded.
Recognizing the major gaps in the medical research landscape and the potential for philanthropic capital to enable science to go further, faster, the Milken Institute Center for Strategic Philanthropy (CSP), together with the Sergey Brin Family Foundation, seeded and launched Aligning Science Across Parkinson’s (ASAP) to tackle barriers to progress in PD research. ASAP is a multi-year, multi-stakeholder effort focused on fostering collaboration and resources to understand the roots of this disease and unearth the answers needed to diagnose, treat, and ultimately prevent it.
Approach
CSP brought together more than 100 multidisciplinary experts, nonprofit funders, industry leaders, patients, and strategists to inform a strategic roadmap and thoughtfully guide future investments in scientific discovery. Led by Nobel Laureate Randy Schekman, PhD, (who lost his wife to Parkinson’s in 2017), ASAP is championing a three-part strategy to support collaboration, generate research-enabling resources, and democratize data.
This philanthropically led effort will be managed to encourage cooperation and collaboration among investigators and funders, reduce redundancy, and enable researchers to pursue their most ambitious ideas.
Outcomes and Next Steps
Following two years of planning, ASAP made considerable progress to coordinate and collaborate within the field and across scientific disciplines. In October 2019, ASAP launched a funding opportunity for up to $9 million over three years for research teams to form the ASAP Collaborative Research Network. Momentum continues to build. In December 2019, ASAP launched its first resource, the Global Parkinson’s Genetics Program, which is an effort to build out the world’s largest genetics database for PD in diverse populations.
While ASAP is still in its early phase, and there is still much to do, the collective impact approach used to develop and now implement ASAP has the potential to serve as a model to advance progress in other disease and issue areas.