Sibling Spotlight
Addyson (age 11)
Hi my name is Addyson Gruber. I am 11 years old and I live in Cincinnati Ohio with my brother Braxtin, my mom Katie and my dad Mark, and Braxtin’s service dog, Dawson. I am going into the 6th grade…
Find a Doctor
Experienced LGS Providers — Across the Lifespan Looking for a healthcare professional experienced in Lennox-Gastaut Syndrome (LGS)?This directory features providers who have treated individuals with LGS and related epilepsies and have been recommended by families within the LGS community. Finding…
Seizure Action Plan Awareness Week
February 10-17, 2025
In 2021, the Seizure Action Plan (SAP) Coalition launched its new website in conjunction with Seizure Action Plan Awareness Week. The website offers information and resources for patients, professionals, and advocacy organizations to learn about and spread awareness of:…
Seizure Clusters, Status Epilepticus, and Rescue Medication
Seizure clusters and status epilepticus are common in LGS and are a seizure emergency. A Seizure Action Plan should be created for every individual with LGS and shared with other caregivers. Seizure Action Plans outline what to do during a…
Sibling Spotlight
Bennett (age 6)
Hi, my name is Bennett. I am six years old and in the 1st grade. I live in Leesburg, Va. I like to play soccer, build legos, build houses out of cardboard boxes, and play with my family and friends….
Sibling Spotlight
Tenley (age 10)
Hi, my name is Tenley. I am ten years old and in the 5th grade. I live in Leesburg, Va with my parents Carl, and Jeannie, my two brothers Bennett and Jackson, and our two dogs Hoop de Doo and…
Seizures & Safety
Safety Is a constant Concern for those with lGS Children and adults with LGS have frequent seizures and are at high risk of injury. Further, they may not have the ability to sense danger, may wander off from their home…
Infantile Spasms Awareness Week
#ISAW
What is Infantile Spasms awareness week (ISAW)? Infantile Spasms Awareness Week (ISAW) is held annually on December 1-7 to raise awareness of Infantile Spasms (IS). ISAW is hosted by the Infantile Spasms Action Network (ISAN), a group of more than…
Keeping a Seizure Diary
Keep a seizure diary to track seizures along with other important details, such as changes in your diet, schedules for all medications, sleep patterns, and more. This diary can be a valuable resource when discussing your condition with your neurologist…
Sudden Unexpected Death in Epilepsy (SUDEP)
Mortality due to epilepsy is a significant concern for the families of those with LGS. Seizures can sometimes be fatal for a number of reasons. Some children with LGS may lose their lives due to accidents, status epilepticus, or illness….