With over 50 years of history, the Epilepsy Foundation is a nationwide organization focused on fighting epilepsy and helping individuals overcoming the challenges of living with it. As a network of local partners in nearly every state, the foundation gives people access to treatment and support, funds research to accelerate therapies and a cure, and leads advocacy efforts, also educating the public about first aid for epilepsy and seizures.
A local chapter of the foundation, the Epilepsy Foundation Florida provides referral assistance and offers community-based services. These services include individual and family support and epilepsy-related education for employers, school nurses, first responders, and other allied health professionals.
The Epilepsy Foundation Florida aims to serve people with epilepsy across Florida--an estimated 223,000 individuals including those with other seizure-related conditions. Located in Tampa, the Florida chapter works closely with the national foundation to develop and execute services and programs such as a 24/7 seizures and epilepsy helpline, Kids Crew, My Seizure Diary, and community seizure education and training.
The Kids Crew program aims to empower kids and give them a platform to impact others. The Epilepsy Foundation created this program to encourage kids to educate their families, friends, and community about epilepsy, share their stories to give others the opportunity to learn from their experiences, and participate in local walks. Families across Florida engage in the program, and children with or without epilepsy can join.
Another tool that the Epilepsy Foundation created to help people with seizures is My Seizure Diary. A self-management app for monitoring and tracking seizures, My Seizure Diary also helps manage medication, communicate with health care providers, and understand events that can trigger seizures. It is available at iTunes and Google Play stores or through the web app diary.epilepsy.com.
When it comes to seizure education and training, anyone who interacts with the public may order online, on-demand, or in-person training through their local chapter. For in-person training, it is necessary to contact the Epilepsy Foundation Florida office via email or phone to request information or arrange a session. The Epilepsy Learning Portal features all of the Epilepsy Foundation’s online and on-demand training. The foundation also provides live and online webinars upon availability.
The Epilepsy Foundation not only raises awareness through training and programs, but also engages families in a variety of activities organized by their local chapters. The Florida chapter, for example, planned four “End Epilepsy” workshops and several golf fundraisers in 2020. Chase Away Epilepsy, for instance, was held in November in Bradenton, Florida, bringing together a team of advocates for a cure for epilepsy.
Furthermore, the Epilepsy Foundation Florida has a partnership with several outstanding epilepsy centers focused on diagnosing and treating the condition. According to the National Association of Epilepsy Centers (NAEC), there are four levels of epilepsy care. The state of Florida features epilepsy centers levels three and four--meaning that they are compliant with all NAEC accreditation criteria, providing advanced care for patients who need a range of neuropsychological, medical, and psychosocial services, as well as intensive neurodiagnostic monitoring.
