Epilepsy Foundation Florida helps people minimize the challenges of living with epilepsy. The foundation also supports therapies and treatments that demonstrate the potential to prevent epilepsy-related seizures. With these objectives in mind, the organization has established multiple programs and services.
The foundation’s Epilepsy and Seizures 24/7 Helpline has numerous specialists to assist with epilepsy-related problems. The helpline staff is prepared to provide relevant information about epilepsy and emotional support and information on local and national resources. Helpline specialists work with individuals with epilepsy, caregivers, or individuals interested in learning more about the condition.
People can call the helpline to discuss current treatments, alternative therapies, medications, educational materials, and first aid and safety procedures for seizures. Helpline specialists also can put callers in touch with local support groups and address questions about employment and discrimination. Individuals can reach the Epilepsy and Seizures 24/7 Helpline at 800-332-1000.
The Epilepsy Foundation Florida Kids Crew program has three goals. The first is to raise awareness of epilepsy and seizures for kids and families throughout the state. The second is to function as a platform for individuals and families to share their stories and enable others to learn from their experiences. The third goal is to encourage engagement with other philanthropic organizations and initiatives, such as the Purple Pumpkin Project, Lemonade for Livy, and various charity walks.
My Seizure Diary is another invaluable service provided by Epilepsy Foundation Florida. The service acts as a digital self-management tool that allows individuals to record and track information on their epilepsy and seizure history. The diary offers space for the user’s medical history, medication information, and personalized information such as moods and side effects of medications. My Seizure Diary also sets medication reminders and formulates seizure response plans that users can share with family members, friends, and employers.
The foundation’s SUDEP (sudden unexpected death in epilepsy) Institute provides bereavement support to the families of lost loved ones. While people with epilepsy can lead normal, healthy lives, those who continue to experience seizures are at increased risk of complications, including injury and death. In addition to bereavement support, SUDEP offers a range of information on SUDEP prevention.
The Epilepsy Foundation’s SUDEP Institute has recently come out in support of new SUDEP guidelines developed for medical professionals by the American Academy of Neurology and the American Epilepsy Society. These guidelines have been created with a goal of improving standards of care and more complete disclosure rates. The institute is also a proponent of continued SUDEP research to understand epilepsy’s causes and methods of prevention.
Epilepsy Foundation Florida provides numerous research and educational resources. Educational opportunities include community meetings to learn more about the condition and accredited training programs serving school nurses, child care personnel, and other professionals.
The Epilepsy Foundation Research Department supports many projects for improved epilepsy treatment and care. In 2017, the foundation’s Epilepsy Therapy Project became the first supporter of a genetic therapy for epilepsy.
Additional services and programs include Teens Speak Up! and numerous Walk to End Epilepsy events throughout Florida. Further, Epilepsy Foundation Florida supports advocacy efforts at local, state, and national levels.
To learn more about its services and programs, visit epilepsyfoundationfl.org. You can also learn about the national organization at epilepsy.com.
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