Latest News

Disease Management

The Disease Management section helps caregivers collect and organize key medical information, including contact information for all medical providers, a full medical history, current medications and dosages, allergies, medical equipment, and more. It also includes a Seizure Action Plan and…

More

Advocates for LGS: A Summer of Advocacy

The Advocates for LGS had a busy summer. With the recent passage of HR 1 (The One Big Beautiful Bill Act), the healthcare landscape has shifted dramatically, leaving an uncertain future for many of our loved ones with LGS. Now…

More

Power Hour: Understanding Neurodevelopmental Disorders After Epilepsy Surgery

Families of children with drug-resistant epilepsy often face challenges that go beyond seizures — such as learning difficulties, behavior struggles, or attention issues. Many parents are left asking: What’s really going on, and how can I help my child? To…

More

My Brother’s Journey with LGS

A Story of Love, Resilience, and Advocacy

My name is Matthew. I’m 36 years old, and my story begins with my beautiful brother, Thomas. Thomas was born in 1983, and just four years later, he was diagnosed with epilepsy. At the time, our family knew very little…

More

Honoring Maurice

A Life of Love, Resilience, and Butterflies

Around the age of three, Maurice began having seizures. They weren’t just one kind—he experienced several types, each unpredictable and frightening. He fell often and eventually wore a helmet to protect his head. Despite this, Maurice still lost his front…

More

The EMERALD Study

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…

More

Daily Living

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…

More

Advancing LGS Care & Research: Highlights from the 2025 Meeting of the Minds

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)….

More

Charlie’s Story: Living in the Now

Charlie was born on February 25, 2011, in Lansing, Michigan—the youngest of five grandsons. From the very beginning, he was full of life. He reached milestones quickly—talking, walking, and potty training earlier than his cousins. He was healthy, vibrant, and…

More

International Family & Professional Conference

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…

More