Mission & Values

Epidemiological data indicate that 10% of Americans will suffer a seizure at some point in their lives; 1-2% will have epilepsy. Epilepsy is characterized by re-occurring unprovoked seizures and affects 3.4 million Americans. At least 50% of the total population of individuals with epilepsy will have started having seizures at less than 20 years of age. Compared to the general public, people with epilepsy have higher rates of premature mortality, injury, cognitive impairment, depression, social isolation, and unemployment.

Our scientific understanding of seizures and epilepsy has grown dramatically over the last decades, revealing that epilepsy is not a single disease. Rather, it is a heterogeneous set of disorders with genetic and acquired etiologies better described as “the epilepsies.” There is a wide diversity of seizure types, epilepsy syndromes, outcomes and etiologies. For some, epilepsy is a manageable chronic illness -- affected individuals have risen to the highest echelons of professional success. However, for others, epilepsy is a devastating and progressive disease leading to developmental delay, regression and early death.

Wide variations in epilepsy care delivery and clinical practice may also contribute to poor individual outcomes. Achieving the best possible outcome and highest possible quality of life for every person with epilepsy requires a system with at least four components; high-quality medical care, accessible community services, supportive environments in which to live, learn, work, and play, and an activated individual and family. Unfortunately, today, the health promotion components that support people with epilepsy often do not function as a cohesive system. Healthcare and social support and self-management programs are isolated from each other, making it difficult for anyone to experience truly comprehensive care.

Health disparities create poorer outcomes for some groups within our community, driven in part by social determinants of health. For example, there are racial and ethnic disparities to comprehensive epilepsy care. We know that anyone with a brain can have a seizure or develop epilepsy; the epilepsies affect people of all ages, genders, races, ethnicities, and socioeconomic status. However, the impact of an epilepsy diagnosis is not equal.