Aligning Science Across Parkinson's (ASAP) | Coalition for Aligning Science (CAS) | USA
Dr. Ekemini A. U. Riley is the Founder and President of the Coalition for Aligning Science (CAS), an organization she founded in 2020 to design and implement large-scale research programs across multiple disease areas. A molecular biologist by training, she is energized by devising creative ways to tackle scientific challenges and facilitating productive collaboration. She has designed and facilitated several multi-sector think tank sessions to inform the strategic deployment of philanthropic capital, crafted research programs, and seeded multi-funder collaboration. As President of CAS, Dr. Riley sets overall strategy across major philanthropic portfolios focused on accelerating discovery and therapeutic development in biomedicine.
She serves as Managing Director of Aligning Science Across Parkinson’s (ASAP), the flagship initiative under the Coalition’s management, which she spearheaded from conception to launch. Dr. Riley is a member of the National Advisory Neurological Disorders and Stroke Council (2020-2024). This body informs institute program planning, concept clearance for NINDS initiatives, policies affecting extramural research programs, and funding decisions of the institute. She led the launch of WastewaterSCAN - a national effort to spread a leading approach for monitoring pathogens through municipal wastewater systems to inform public health responses locally and nationally.
Previously, Dr. Riley was a Director at the Milken Institute Center for Strategic Philanthropy. She helped to shape and co-direct the center’s medical research practice, executing directly on workstreams in oncology, circulatory, and neurodegenerative conditions.
She earned her BA in Natural Sciences from Johns Hopkins University and PhD in Molecular Medicine from the University of Maryland School of Medicine.
ASAP
Deputy Director
Sonya Dumanis, PhD
Aligning Science Across Parkinson's (ASAP) | Coalition for Aligning Science (CAS) | USA
Dr. Sonya Dumanis is the Executive Vice President of the Coalition for Aligning Science, where she provides strategic guidance on both the design and implementation phases of portfolio programs and mentors scientific staff across the initiatives under the Coalition's management. She also serves as the Deputy Director of Aligning Science Across Parkinson’s (ASAP), providing operational oversight to the programs under the ASAP umbrella.
Previously, Dr. Dumanis was the Vice President of Research and Innovation at the Epilepsy Foundation. While there, she oversaw the growth of the Epilepsy Therapy Project, an entrepreneurship incubator providing seed funding and mentorship to epilepsy startups, and the Epilepsy Innovation Institute, an innovation incubator tackling high-risk projects in the epilepsy space. She continues to co-direct the Epilepsy Startup Accelerator Course and serves as an advisor for the Diagnostics & Tracking Research Roundtable for Epilepsy.
Dr. Dumanis completed her postdoctoral training at both the Johns Hopkins University and the Max-Delbrück Center in Berlin, Germany. She earned her PhD in neuroscience from Georgetown University. She has authored numerous scientific articles and received a number of honors, including an Alexander von Humboldt Postdoctoral Research Fellowship, a National Science Foundation fellowship, a national research service award from the National Institutes of Health, the Harold N Glassman Award for best science dissertation at Georgetown University, and the Mark A. Smith prize from the Journal of Neurochemistry.
At the Aligning Science Across Parkinson’s (ASAP) initiative, we are dedicated to accelerating the pace of discovery and informing the path to a cure for Parkinson’s disease through collaboration, generating resources, and sharing data. We created this global research initiative to better understand the roots of Parkinson’s disease and deliver faster and better outcomes.
Our approach from the beginning has been purposeful and deliberate. Our program is different from traditional funding programs due to our ability to make large, long-term commitments; our appetite for risk and ability to support studies that might otherwise not be funded; and our steadfast belief that we can accelerate advances by fostering a collaborative and open approach to research through our open science policies. Here, we outline ASAP’s inception and our initiative’s evolution.
Devising a Strategic Roadmap
Since 2017, we have engaged more than 100 multidisciplinary experts and strategists to inform the strategic roadmap and thoughtfully guide future investments in scientific discovery for Parkinson’s disease research. Through diligent collaboration with Parkinson’s disease and non-Parkinson’s disease experts from academia, industry, government, and the patient community we developed our strategic roadmap which approaches research with a multidisciplinary and multi-stakeholder lens.
During a two-year planning process, we held multiple convenings with stakeholders, including the Planning Advisory Council, peer funders, and program leaders in neuroscience. Together, we determined that the initiative would build on underfunded key research areas with an emphasis on enhancing our understanding of Parkinson’s disease through large, unbiased data collection and analysis.
Deploying New Programs
In 2019 we launched the Global Parkinson’s Genetics Program (GP2), an ambitious resource program to understand the genetic architecture of Parkinson’s disease through genotyping over 250,000 volunteers around the world. We also announced the first funding opportunity for the Collaborative Research Network (CRN) – an international, multidisciplinary, and multi-institutional network of collaborating investigators who are working to address high-priority research questions. We began by funding two tracks of research, PD Functional Genomics and Neuro-Immune Interactions.
Over the next two years we continued to expand our supported programs. We supported the expansion of the Parkinson’s Progression Markers Initiative (PPMI), a landmark observational study sponsored by The Michael J. Fox Foundation for Parkinson’s Research that is designed to support strategies to investigate and define biomarker signatures for Parkinson’s disease. In addition, we announced a third track of research for the CRN, focused on, Circuitry and Brain-Body Interactions. We also continued to expand the reach and impact that GP2 has in traditionally underrepresented populations.
Pioneering a Path of Open Science
From the inception of ASAP, we have been committed to open science to accelerate discoveries to diagnose and treat Parkinson’s disease. By adhering to our open science principles, we facilitate the rapid and free exchange of scientific ideas and ensure that the research we fund can be leveraged by anyone for future discoveries.
As an advocate for implementing and operationalizing open science across research, we developed and have committed to updating our Blueprint for Collaborative Open Science, which outlines how we use open science to advance our goals. Our Blueprint is also a tool to help others implement open science policies and programs and has been adopted by initiatives in other areas of high-priority scientific research and neurodevelopment, such as Breakthrough Discoveries for Thriving with Bipolar Disorder (BD2). We offer a number of open science resources to assist other funders and institutions as they consider open science implementation frameworks.
Supporting the Generation and Dissemination of Tools and Resources
ASAP is committed to supporting the generation and sharing of datasets, code, lab materials, and protocols. As part of this effort, we launched our Catalogwhere all outputs from ASAP-supported programs are findable and adhere to Open Science standards. In addition, we have:
Developed the Discover ASAP video interview series (originally Protocol Particulars), which highlights tools that are connected to the ASAP initiative. The series provides another mechanism for us to promote resources that the scientific community might build upon to enhance scientific discovery.
Launched the CRN Cloud, a data sharing tool that allows researchers across the scientific community to access and analyze omics data from our network. Our hope is that the CRN Cloud will serve as a platform that amplifies the impact of this unique data by reducing data accessibility barriers, thereby promoting discovery in Parkinson’s disease research.
Funded an expansion of the Alzforum Parkinson’s Disease Research Models database, a forum for cataloging information regarding the characterization of preclinical rodent models.
Accelerating Discoveries
We are tremendously encouraged by the discoveries our supported programs have contributed to date. Below are a few highlights:
As part of our collective commitment to open science, CRN teams post preprints on an average of eight months before they are released for final publication. Original research articles and reviews from the CRN spanned across multiple disciplines, ranging from Parkinson’s disease genetics to the impact of the immune system to understanding the role of brain circuits in Parkinson’s disease.
In 2023, GP2-led research discovered a new gene variant, GBA1, in Nigerian populations, paving the way for a greater understanding of the genetic components of Parkinson’s disease.
Also in 2023, PPMI validated the use of the alpha-synuclein seed amplification assay (αSyn-SAA) test for early diagnosis of Parkinson’s disease. And in the summer of 2024 the U.S. Food and Drug Administration issued a letter of support to encourage scientists and drug developers to adopt the αSyn-SAA test for research and clinical trials.
Supporting the ASAP Workforce
In 2023, we piloted the Care & Career Program to provide childcare stipends of up to $10,000 per household to members of the CRN to support the retention of graduate students and early-career researchers in neuroscience. The program was expanded in 2024 to include eldercare, as well as key personnel from PPMI.
Advancing Our Mission
We could not do this work alone. ASAP joined forces with other organizations to help move the research field forward, including AMPⓇ PD, ORFG, and Plan S. We are grateful to be managed by the Coalition for Aligning Science (CAS) and work collaboratively with MJFF to implement our programs. We are extremely grateful to the partners, collaborators, researchers, and study participants for believing in our vision and mission, and embracing our commitment to open science and collaboration.
Interested in learning more about our impact? Dive into the details by checking out our annual Years in Review.
Related Content
Protocol Problems: Figuring Out How an Experiment Was Done
Check out this open science blog to understand why ASAP requires a recipe-style protocol or Methods paper to be shared for every Methods section in a manuscript.
Celebrating the Collaborative ASAP Community Through Art&Science
Dr. Dorotea Fracchiolla from Team Hurley and Founder of Art&Science shares her recent series of paintings that depict the brains of Parkinson's disease (PD) patients and highlights ASAP's role in facilitating collaboration and knowledge-sharing in the PD community.
PINK1 Pathway to Parkinson’s Disease: 20 Years On
Check out this blog to learn more about the PINK1 meeting that took place in London in November 2024 that marked the 20th anniversary of the discovery of PINK1 mutations linked to Parkinson’s disease.
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son’s disease and non-Parkinson’s disease experts from academia, industry, government, and the patient community we developed our strategic roadmap which approaches research with a multidisciplinary and multi-stakeholder lens.
