Externally-Led PFDD Meeting on the Developmental and Epileptic encephalopathies (DEEs), including LGS On November 1, 2019, the LGS Foundation convened the first patient-focused drug development meeting (PFDD) for the DEEs (developmental and epileptic encephalopathies) including Lennox-Gastaut Syndrome in College Park….
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…
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…
A Seizure Action Plan should be created for every individual with LGS and shared with other caregivers. What is a Seizure Action Plan (SAP)? A seizure is a medical emergency. A Seizure Action Plan (SAP) contains tailored guidelines on how…
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…
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….
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:…
The following list contains links to additional resources and third-party websites. The LGS Foundation is not responsible for the content or privacy policies of these external sites. While we try to only list sites here that we feel contain useful…
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….
Adopted mother to 16-year old Brian.
After nine years of teaching special education, Tayla decides it’s time for a change and hands in her resignation. The next day she meets her adoptive son, Brian. “ Brian was this frail, ornery, sickly little boy, and he started…
