Who We Are: Advancing Epilepsy Wellness Through Strategic Partnerships
Epilepsy Wellness Advocates (EWA) is a privately funded, research-informed organization focused on improving the quality of life for people living with epilepsy through collaborative partnerships and wellness-centered initiatives.
Free from pharmaceutical or institutional influence, we are committed to developing and supporting unbiased, evidence-based approaches to epilepsy management. Our efforts center on empowering individuals, families, and the organizations that serve them with practical tools, education, and support.
Epilepsy management extends far beyond clinical settings. Together with our partners, we’re building new ways to live well with epilepsy.
- To help you, we:
- Aggregate user-generated research and medical data into usable tools and programs
- Capture and analyze data to inform the epilepsy industry’s leading tools and resources
- Aim to become an invaluable resource between patient and care provider
- Leverage user-generated data through surveys, community collaborations and digital, technology, and the Internet of Things (IoT)
- Use our community as a platform to deliver best practices, programs and tools for managing epilepsy, including something as simple as wearing an epilepsy bracelet to the far more complex.
The Story Behind Our Mission: Charles L. Shor
Charlie Shor’s personal journey with epilepsy is at the heart of everything we do.
At 25, Charlie was on the fast track to running his family’s business, Duro Bag. But life took a sharp turn when he experienced his first seizure while traveling. A diagnosis of epilepsy soon followed, along with years of uncertainty, ineffective treatments, and difficult side effects.
Despite facing overwhelming obstacles—including the trauma of a violent kidnapping—Charlie persisted in both life and business, ultimately growing Duro Bag into the world’s largest paper bag manufacturer. Yet throughout his success, epilepsy remained a constant and often invisible challenge.
In 2014, after decades of personal trial and relentless search for better answers, Charlie turned his attention fully to helping others. He launched the Charles L. Shor Foundation to fund research and programs that would reimagine epilepsy wellness and elevate non-traditional approaches to management.
“Epilepsy beats you up intellectually. You feel as if you’ve been hit countless times. You wake up and don’t remember what you were talking about. I don’t want that happening to anyone else.”
A New Direction: Wellness-Informed Research, Rooted in Experience
Charlie’s perseverance led him to Dr. Imad Najm at Cleveland Clinic, where a personalized, lifestyle-informed treatment plan dramatically reduced his seizures—from daily occurrences to roughly one per year. This transformative success fueled a new research directive: to understand how non-medication interventions can improve outcomes.
Charlie challenged Dr. Najm to explore wellness strategies that go beyond medication and surgery. With an initial $5.5 million investment, EWA funded a landmark clinical study examining how stress reduction, memory support, and other holistic practices impact seizure frequency and cognitive health in individuals with treatment-resistant epilepsy.
This initiative reflects our belief: research should reflect the lived experience of people with epilepsy and prioritize solutions that enhance everyday life, not just clinical metrics.
Why We Partner: Enhancing Wellness Through Research and Collaboration
Today, EWA is focused on identifying and funding innovative research initiatives, tools, and programs that support everyday wellness and long-term epilepsy management.
We seek to collaborate with epilepsy-focused organizations, academic institutions, and research teams. Together, our aim is to develop approaches that empower people living with epilepsy, without relying solely on traditional treatments.
Through our partnerships, we strive to:
- Fund wellness-focused research and clinical studies that explore integrative, alternative and complementary epilepsy seizure management strategies.
- Support development of practical, evidence-based tools that improve day-to-day quality of life for people with epilepsy.
- Elevate programs that promote stress management, cognitive health, nutrition, physical activity, and other holistic factors to manage people’s epilepsy.
- Create scalable resources that partner organizations can use to extend their reach and impact around integrative epilepsy alternatives.
Our goal is to bring together the brightest minds, ideas, and resources to move epilepsy wellness forward—faster, more meaningfully, and with those most affected at the center.
If your organization shares our vision for improving the lives of people with epilepsy, we want to hear from you.