How Can We Grow Awareness of Epilepsy and the DEEs?

Increasing awareness of epilepsy, including developmental and epileptic encephalopathies (DEEs), requires a multifaceted approach that integrates education, storytelling, advocacy, and collaboration. Meaningful progress occurs when awareness efforts extend beyond a single campaign and become embedded in healthcare systems, public policy, and broader public understanding.

Key approaches include:

Elevating Patient and Family Voices

One of the most effective ways to raise awareness is by amplifying the authentic experiences of patients and families living with epilepsy and DEEs. Personal stories help translate complex medical conditions into relatable experiences that foster empathy and understanding. This can include storytelling campaigns across social media and websites, as well as opportunities for patients and caregivers to speak at conferences and educational events for healthcare professionals.

Expanding Education Across Key Audiences

Awareness alone is not enough; it must be paired with education to create meaningful change. Efforts should reach everyone who interacts with people living with epilepsy, including healthcare providers, schools and educators, first responders, and the general public. Developing accessible, evidence-based resources that can be easily shared helps ensure information is widely available and impactful.

Leveraging Strategic Partnerships

Collaboration across organizations strengthens awareness efforts and expands their reach. Advocacy groups, research institutions, industry partners, and healthcare systems can work together to co-host educational programs, lead awareness campaigns, share resources and data, and support research and clinical trials. These partnerships also help ensure consistent messaging and prevent duplication of efforts across the epilepsy community.

Strengthening Social Media Presence

Social media provides a powerful way to engage broader audiences. Coordinated social media campaigns around key awareness moments - such as Purple Day® - along with educational webinars and virtual events can significantly expand reach. Maintaining a strong digital presence helps keep epilepsy visible year-round, rather than limiting awareness efforts to a single month or campaign.

Advocating for Policy and Research Investment

Awareness should ultimately lead to meaningful action. Advocacy efforts can focus on increasing federal funding for epilepsy research, advancing policies that support earlier diagnosis and improved care, expanding access to treatments and clinical trials, and ensuring insurance coverage and supportive services for families. Efforts such as Hill Days and the National Plan for the Epilepsies provide an important framework for aligning stakeholders, setting national priorities, and driving coordinated progress in research, care, and public health for people living with epilepsy.

Building and Empowering the Community

A strong and connected community is essential for sustaining awareness. Providing individuals and families with the tools to advocate - such as awareness toolkits, educational materials, and training - helps support grassroots outreach in schools, workplaces, and communities.

Moving forward requires continued collaboration, sustained investment in research, and an ongoing commitment to elevating the voices of those directly affected. By combining public awareness, professional education, advocacy, and community engagement, the epilepsy community can reduce stigma, improve care, and accelerate progress toward better treatments - and ultimately cures - for patients and families living with epilepsy.

Mary Anne Meskis was a founding member of the Dravet Syndrome Foundation (DSF) in 2009 and has served as chief executive officer since 2012. She has been actively involved in advocacy for the Dravet syndrome (DS) and broader rare epilepsy communities, contributing to multiple epilepsy-focused working groups and industry advisory panels since her son’s diagnosis in 2004. She resides in western North Carolina with her husband and their youngest of 3 children, Elliot, who has DS.

Editor’s Note: Purple Day is owned by The Anita Kaufmann Foundation and is used under license from The Anika Kaufmann Foundation.