6/26/1973 - 12/16/2016
Brian was the oldest of our three sons. He began having petit mal seizures (head drops) at 9 months old. On the day of his first MMR vaccination, he encountered his first tonic-clonic seizure. It lasted approximately 15 minutes. Until…
9/16/1995 - 9/13/2013
Matthew’s spirit lives on today through having touched many lives in his almost 18 years. I noticed Matt’s seizures, which presented as stretching episodes, on our first day home from the hospital. After two months of the pediatrician telling me…
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…
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…
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…
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….
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…
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….
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…
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…
