More seizure-free days may be on the horizon
The EMERALD clinical study is evaluating an investigational medicine, relutrigine, to understand its safety and how effective it may be at reducing seizures in children and adults living with Developmental and Epileptic Encephalopathies (DEEs). Relutrigine is an investigational medicine that…
The Daily Living section equips caregivers with practical, everyday support strategies. It outlines personal care tasks – such as bathing, toileting, and similar routine activities – and explains how to determine if home health services might best support your loved…
When great minds meet, great breakthroughs happen!
The 2025 LGS Research Meeting of the Minds, held July 21–22, brought together over 100 caregivers, healthcare professionals, researchers, and industry partners committed to improving care for individuals living with Lennox-Gastaut Syndrome (LGS) and associated developmental and epileptic encephalopathies (DEEs)….
Help Raise Awareness this November!
Six Weeks of Action | One Global Voice for LGS This fall, the LGS Foundation invites YOU—families, friends, allies, and supporters—to help us shine a light on Lennox-Gastaut Syndrome (LGS). Whether you have a personal connection to LGS or simply…
Locations Around the World Light Up for LGS Awareness
The LGS Foundation continues to shine a light on Lennox-Gastaut Syndrome as we #IlluminateForLGS—raising awareness and promoting understanding of what truly matters to LGS families. Join Us & Illuminate for LGS Awareness! Starting on November 1 and continuing throughout the…
Some conversations are tough to have when you don’t know where to start. And especially when it comes to talking about the topic of Long-Term Care Plans for your loved one with a rare epilepsy. Below are insights shared by…
The definition and rules governing Guardianship vs. Conservatorship can vary from state to state; therefore, please seek legal advice for details on your specific state laws and what type of guardianship or conservatorship your loved one will require. A guardianship…
Growing old is an inevitable part of life, but it can be especially daunting for those who care for individuals with a rare epilepsy. Life as a caregiver (e.g., cooking, managing medicines, medical appointments, therapy, etc.) can lead to decreased…
Ages 19-22
Transition to adulthood is a complex, confusing, and often emotional process. It’s also the first important step to plan for as you consider the long-term adult C.A.R.E. Plan for your loved one. For each family, the process can look and…
Ages 17-18
Many families ask, “When should I start planning?” Some families may be feeling they are already behind in the process and are wondering, “Is it too late to start planning?” If your loved one is older than age 13 and…
