Latest News

Transition of Care for an Aging Caregiver

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…

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In Loving Memory of Hesekiah

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…

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A Mother’s Love, A Community’s Support:

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…

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Aging Out of School into Daily Life

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…

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Preparing for the Transition to Adulthood

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…

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Getting Started in Adolescence

Ages 13-16

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?” While this guide targets age 13 as a starting point…

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In Memory of Harrison James Camarro

12/25/1996 - 04/07/2025

Harry’s Joy Ride: A Tribute to Laughter & Love One of our favorite memories with Harry happened on long car rides. Like many families, we’d be cruising down the highway, music playing, conversations flowing. But what made our drives unforgettable…

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The Lighthouse Clinical Study

The Lighthouse Clinical Study is currently enrolling children and adults with Lennox-Gastaut Syndrome (LGS) to evaluate a new potential treatment. The goal of this study is to learn whether an investigational medication called clemizole can help reduce the number of…

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Savannah, Forever in Our Hearts

Savannah’s spirit will forever live on in the hearts of all who had the honor of knowing and loving her!

The LGS Foundation and our entire community are deeply saddened by the news of the passing of Savannah, the beloved daughter of our Executive Director, Tracy Dixon-Salazar. Savannah’s spirit will forever live on in the hearts of all who had…

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Rare Disease Week 2025

Why advocating for people with disabilities, rare diseases, and chronic illnesses is important to the LGS Community!

Every year, during the last week of February, advocates representing dozens of rare diseases, take time from their chaotic, medically complex lives and travel to Washington, D.C. to raise awareness of the needs of the rare disease community. And LGS…

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