Why Epilepsy?
Epilepsy is one of the most common neurological disorders in the world, yet it remains one of the least understood. More than 3.4 million people in the United States and an estimated 65 million people worldwide live with epilepsy. It affects people of every age, race, and background, but despite its prevalence, misconceptions and stigma continue to impact the lives of those living with the condition.
For many individuals, epilepsy is far more than seizures. It can affect education, employment, independence, mental health, transportation, and overall quality of life. Families and caregivers often face challenges navigating medical care, finding reliable information, and accessing meaningful support. While advances in treatment have improved outcomes for many, approximately one in three people with epilepsy continues to experience seizures despite available medications, underscoring the need for continued research and innovation.
The Challenge in Western New York
For those living in Upstate and Western New York, these challenges are often compounded by a lack of local resources. While larger metropolitan areas may have multiple epilepsy centers, specialists, and support organizations, many individuals in our region must travel significant distances to receive specialized care or participate in support programs. Access to epilepsy-focused educational events, caregiver networks, research opportunities, and advocacy initiatives remains limited compared to other parts of the state.
This geographic gap can leave individuals and families feeling isolated, making it more difficult to connect with others who understand their experiences or to find the resources they need. Many communities simply do not have local organizations dedicated exclusively to epilepsy, creating an unmet need for education, outreach, and collaboration.
ELA Institute was founded in part to help address that need. Based outside of Buffalo, we are committed to strengthening the epilepsy community throughout Upstate New York while building partnerships that extend our impact nationwide. We believe that where someone lives should never determine the quality of information, support, or opportunities available to them.
