Epilepsy Foundation Awarded Two-Year Grant from NINDS to Address Health Disparities in Epilepsy Care

BOWIE, Md., December 3, 2025 — The Epilepsy Foundation of America, together with Massachusetts General Hospital and additional collaborators, has launched a planning grant aimed at developing a heath disparity research agenda for epilepsy. Under the direction of Dr. Brandy Fureman, PhD (Chief Outcomes Officer, Epilepsy Foundation) and Dr. Lidia Moura, MD, PhD, MPH (Associate Professor of Neurology, Harvard Medical School, Associate Professor of Epidemiology, Harvard T.H. Chan School of Public Health, Director of Population Health, Neurology Department, Mass General Brigham, and Co-Director, Center for Value-based Healthcare and Sciences, Massachusetts General Brigham) the Foundation was awarded planning grant funding from the National Institute of Neurological Disorders and Stroke (NINDS) to address disparities in epilepsy outcomes, with an initial focus on understanding the local drivers of epilepsy disparities for Black and African American people with epilepsy, as part of the Community-Engaged HERN Initiative to address neurological health disparities awarded by NIH/NINDS. While the NINDS program funds studies across multiple neurological conditions, including multiple sclerosis and stroke, this is the only grant focused specifically on addressing disparities in epilepsy.

Although epilepsy affects people across all demographic groups, decades of research have shown that the burden is not equally shared. Differences in outcomes, which are shaped by socioeconomic status, geography, race and ethnicity, and access to adequate health insurance, contribute to higher rates of mental health challenges, emergency department use, hospitalization, and early mortality. These disparities also reflect deeper systemic barriers that reduce access to high-quality, coordinated care.

This grant seeks to understand what drives these differences within local communities and to map out pathways for meaningful intervention. The central focus of the project is the development of new community-focused survey tools designed to identify the barriers that prevent people with epilepsy from receiving timely and effective care. These tools will help measure the impact of socioeconomic factors, health system navigation challenges, neighborhood environments, and other structural barriers. Once developed, they will be tested locally and refined into toolkits that can be used in other communities across the Epilepsy Learning Healthcare System (ELHS) network and beyond.

“This planning grant represents a critical step in addressing the disparities that have persisted for far too long in epilepsy care,” said Thometta Cozart, MPH, MS, CPH, CHES, Senior Director of Multicultural Outreach and Health Equity at the Epilepsy Foundation. “Communities most affected by disparities have repeatedly told us that solutions must be shaped with them, not simply delivered to them. This includes ensuring that the experiences of Black and African American patients, who face some of the greatest barriers to care, are centered in our work. We are eager to begin our work with this grant to ensure that equitable, high-quality support reaches every person with epilepsy, no matter their background or circumstances.”

The project strengthens collaborative capacity within ELHS, a national network advancing epilepsy care through quality improvement and co-production with patients, families, clinicians, and researchers, directed by Dr. Fureman. With data analytics expertise from Mass General’s team directed by Dr. Moura, the grant brings together expertise in implementation science, epidemiology, neurology, community engagement, and patient advocacy. This multidisciplinary approach supports the development of rigorous methods to engage local community partners and patient/family advisors, identify and monitor disparities in real time, and prepare for future large-scale interventions.

A key contributor to the community engagement work is Tonya Nash, MPH, CHES, Chair of the Advisory Committee. The Advisory Committee consists of people living with epilepsy, caregivers, epilepsy providers, and community engagement researchers. Tonya’s lived experience as a caregiver for her son with Lennox-Gastaut Syndrome, a rare form of epilepsy, informs her approach to supporting the grant’s mission.

“As both a parent of a child with Lennox–Gastaut Syndrome and Chair of the Advisory Committee, I’ve seen firsthand how deeply disparities impact families,” said Tonya. “We’re not just being consulted. We are co-producing this work from the ground up. Our perspectives are shaping the questions being asked, the tools being created, and the solutions that will emerge. Communities are not an afterthought; we are essential partners in transforming epilepsy care.”

Through this grant, the team will build the infrastructure needed to conduct longitudinal studies on epilepsy outcomes with ELHS centers and their community partners. By piloting interventions locally and creating scalable toolkits, the project aims to extend successful approaches to reduce disparities across the national ELHS network and into new settings.

This initiative aligns with and will feed directly into the quality-improvement framework of ELHS, ensuring that the findings and toolkits developed through this effort contribute to continuous improvement in epilepsy care. To learn more about ELHS, please visit the Foundation’s website. 

About Epilepsy

Epilepsy is the most common chronic brain disorder in the world, affecting people of all ages, races, and backgrounds. According to the U.S. Centers for Disease Control and Prevention (CDC), nearly 3.4 million Americans live with active epilepsy. The condition is defined by a tendency to experience seizures—sudden, abnormal bursts of electrical activity in the brain that can disrupt behavior, awareness, and bodily control. Beyond seizures, epilepsy can also lead to challenges such as fatigue, memory difficulties, mood changes, anxiety, and trouble concentrating, all of which can significantly impact daily life. Visit epilepsy.com to learn more.

About the Epilepsy Foundation of America

The Epilepsy Foundation America is a national nonprofit organization dedicated to improving the lives of people affected by epilepsy through education, advocacy, research, and connection. For more than 50 years, the Foundation has led efforts to raise awareness, reduce stigma, and advocate for policies that make a meaningful difference for individuals living with epilepsy. We also fund cutting-edge research and support early-career investigators working to discover new treatments and therapies. Through our nationwide network of local offices and community partners, the Foundation expands access to care, provides seizure recognition and first aid training, and delivers direct services to those in need. To learn more visit epilepsy.com or call 1.800.332.1000; in Spanish at 866.748.8008 or laepilepsia.org. Follow us on Facebook, Instagram, Twitter, LinkedIn, TikTok, and YouTube.