Resources for Epilepsy
Every day, there are families who are facing an epilepsy diagnosis and feeling overwhelmed, scared and don’t know where to start. A medical diagnosis is life changing and isolating for any condition, but with epilepsy, there is no defined path, and the journey looks different for everyone.
Below are some of our go-to resources for epilepsy information.
NORD - National Organization for Rare Disorders
NORD (National Organization for Rare Disorders), a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. They are a wealth of information when it comes to all things rare diseases!
Epilepsy Alliance North Carolina
Epilepsy Alliance North Carolina is dedicated to supporting those impacted by epilepsy in local communities by confronting the spectrum of challenges created by seizures. EANC is one of the most valuable resources in the Carolinas and beyond when it comes to battling epilepsy.
The Charlie Foundation
The Charlie Foundation for Ketogenic Therapies was founded in 1994 to provide information about diet therapies for people with epilepsy, other neurological disorders and select cancers. Logan experienced a wonderful 7 months of seizure freedom when he was younger thanks to the ketogenic diet and the work of The Charlie Foundation!
Seizure Tracker
Seizure Tracker is dedicated to providing patients, doctors and researchers with free comprehensive tools to help understand relationships between seizure activity and anti-epileptic therapies. We have been using Seizure Tracker for years as a vital tool for tracking every seizure which helps provide accurate reporting to our healthcare team.
LGS Foundation
The Lennox-Gastaut Syndrome (LGS) Foundation is a nonprofit organization dedicated to improving the lives of individuals impacted by LGS through advancing research, awareness, education, and family support. LGS can be a scary and complex condition, but with organizations like the LGS Foundation, families have a valuable partner as they travel this new road.
PMG Awareness Organization
The mission of the PMG Awareness Organization is to build a community of support to enhance the lives of those affected by Polymicrogyria, through education, advocacy and promoting awareness. When Logan was diagnosed with Polymicrogyria (PMG) at 3 ½ months of age, there was so little information available. We are grateful for the PMG Awareness Organization in the work they are doing to help families all over the world navigate life with a PMG diagnosis.
DannyDid Foundation
The DannyDid Foundation is working hard to advance awareness of epilepsy and sudden unexpected death in epilepsy (SUDEP). They are doing such important work in educating families on the existence of SUDEP as well as helping connect those families to devices and technology available for seizure detection.
CURE Epilepsy
Our mission is to find a cure for epilepsy, by promoting and funding patient-focused research. CURE Epilepsy provides abundant information on their latest research findings, current projects and heartwarming patient stories.
