Epilepsy Alliance America is a new, national organization dedicated to providing support, care, and service to those with epilepsy. Officially launched on July 23, Epilepsy Alliance America will have state-based partners in eight states, serving hundreds of thousands of people with epilepsy, and their families, caregivers, and communities.
Epilepsy Alliance America was founded in the wake of the Epilepsy Foundation of America’s disaffiliation on July 22 of several state affiliates, following disagreements about that organization’s direction. In recent years, the Epilepsy Foundation’s focus had shifted towards research, fundraising, and centralizing operations in its Washington area headquarters, while state affiliates remained engaged in providing direct support to people living with epilepsy in their local communities.
“This is a brand new day for those with epilepsy. We have a new name, but the same mission of caring for people with epilepsy, and the people who care for them,” said Karen Basha Egozi, CEO of Epilepsy Florida, a founding partner of Epilepsy Alliance America. “For decades, our focus has been on service, and we’re excited to continue providing education, resources, and hope to people living with epilepsy, their families, their caregivers, and their communities.”
“Research is important, and we all want to find a cure for epilepsy. But our mission is to help those living with epilepsy in our local communities — here and now,” said Dale Dean, a board member of Epilepsy Alliance Ohio, a founding partner of Epilepsy Alliance America. “We want to be the first call for anyone living with epilepsy, the person newly diagnosed with epilepsy, the parent of a child struggling with seizures, and the caregiver of a loved one without work because of their condition. We are here for them.”
The seven state partners include Epilepsy Florida, Epilepsy Alliance Louisiana, Epilepsy Alliance North Carolina, Epilepsy Alliance Ohio, Sociedad Puertorriquena De Epilepsia (Puerto Rico), Epilepsy Alliance New Jersey, and Epilepsy-Pralid, Inc. (New York). All are former affiliates of the Epilepsy Foundation of America; other former Epilepsy Foundation affiliates are in the process of joining in the weeks and months to come.
Services provided by state partners vary, but include educational programs in schools, hotlines and information services for those with epilepsy, caregiver respite programs, and group homes for those unable to live independently due to seizures. Anyone seeking assistance managing their epilepsy should visit EpilepsyAllianceAmerica.org to contact state partners that can provide resources.
3 million Americans are living with epilepsy, with 150,000 more people diagnosed each year. 1 in 26 people will be diagnosed in their lifetimes with epilepsy, a common neurological condition that can cause seizures.