Save the Date for the 10th International Family & Professional Conference July 9-11, 2026 I Orlando, FL Every two years, the LGS Foundation organizes a comprehensive multi-day educational meeting. The conference brings together more than 350 LGS family members…
Advancing Evidence-Based LGS Care Across the Lifespan
2025 LGS Research Meeting of the Minds Advancing Evidence-Based LGS Care Across the Lifespan This biennial Meeting of the Minds research conference brings together hundreds of researchers, healthcare providers, clinical trialists, scientists, advocates, caregivers, and industry partners to push the…
Help Raise Awareness of LGS this November!
Join Us In raising awareness for the more than one million children and adults worldwide living with LGS! YOU are a part of something BIG, and your efforts have a BIG impact. Join us in raising awareness around International LGS…
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…
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…
