Eli
Eli was born in the summer of 2003 at 34 ½ weeks old. He spent 7 days in the NICU due to a ventricular septal wall defect. By 3 months of age, it was evident that he was not meeting…
Help Solve the Mystery of LGS
Epilepsy Awareness Month Focuses on Solving the Mystery of LGS and Other Rare Epilepsies
International LGS Awareness Day brought together thousands of people around the world to show that the challenges associated with LGS are tough, but so are those affected by this rare disease. This also kicked off Epilepsy Awareness Month – we…
Two Peas in a Pod
A Sister's Special Bond
My sister, Robyn, and I are 4 1/2 years apart. We are like any other sisters…we share laughs, tears, and yes, we even argue! What sets us apart is our special bond. From the moment I saw my sister in…
Cash’s LGS Journey
Celebrating 100 Days of Seizure Freedom
Cash is the youngest of our three boys. He is the light of our lives and here to teach lessons to all of us. Cash started having seizures when he was 3 weeks old. These were easily controlled with medications….
Fenfluramine (Fintepla)
New Treatment for Seizures in LGS
What is Fenfluramine? LGS is tough. Finding information shouldn’t be. That is why we provide information about this and other medications often used in LGS. We hope you find this information useful as you navigate your LGS journey. Fenfluramine (the…
Clobazam Oral Film (Sympazan)
New Treatment for Seizures in LGS
What is Clobazam Oral Film? LGS is tough. Finding information shouldn’t be. That is why we provide information about this and other medications often used in LGS. We hope you find this information useful as you navigate your LGS journey….
Cenobamate (XCOPRI)
New Treatment for Seizures
What is Cenobamate? LGS is tough. Finding information shouldn’t be. That is why we provide information about this and other medications often used in LGS. We hope you find this information useful as you navigate your LGS journey. Cenobamate (the…
Perampanel (Fycompa)
New Treatment for Seizures
What is perampanel? LGS is tough. Finding information shouldn’t be. That is why we provide information about this and other medications often used in LGS. We hope you find this information useful as you navigate your LGS journey. Perampanel (the…
Golf-A-Thon to Support the LGS Foundation
Support me as I attempt to hit 1,101 golf balls for LGS Awareness Day (Nov 1) to honor my son, John!
Donate now to honor John! Thank you so much for showing interest in my efforts to raise funds and awareness for Lennox-Gastaux Syndrome (LGS), a rare form of epilepsy that impacts my son, John. John had his first seizure…
Find a Doctor
Are you seeking a healthcare professional experienced in Lennox-Gastaut Syndrome (LGS)? The providers listed below have treated individuals with LGS and/or related disorders and have been recommended by families within the LGS Community. The LGS Foundation strongly recommends that individuals…