Advancing Evidence-Based LGS Care Across the Lifespan
2025 LGS Research Meeting of the Minds: Advancing Evidence-Based LGS Care Across the Lifespan Thank you for being an essential part of the 2025 LGS Research Meeting of the Minds. Your participation and dedication to advancing care for those living…
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…
Stepping Together for a Breakthrough!
Thank You for Making the 10th Annual Walk ‘n’ Wheel for LGS Research a Success! We are deeply grateful to everyone who joined us as we Stepped Together for a Breakthrough at the 10th Annual Walk ‘n’ Wheel for LGS…
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…
04/29/2010 - 11/16/2024
Hesekiah brought joy into every room he entered, always wearing the brightest smile — no matter what he was facing. He had a heart full of love for everyone he met and a deep appreciation for life’s simple pleasures, especially…
Our Journey with Evan and LGS
My name is Ashlee, and I’m the proud mother of Evan—our joyful, resilient 5-year-old son who has completely reshaped our world. Evan was born with Muscle-Eye-Brain Disease, a rare genetic condition that presents many medical challenges. From abnormal brain folds…
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…
