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LGS Research Meeting of the Minds

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…

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International LGS Awareness Day™

Help Raise Awareness this November!

Together for a Breakthrough, Today & Every Day As we close out this year’s awareness campaign, we’re reminded of what makes the LGS community extraordinary: your courage, your voices, your actions, and your unwavering hope. Because of you, more people…

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Guardianships and Conservatorships

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…

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Live and Love Like Emma

12/21/2006 - 06/07/2020

Emma began having infantile spasms at just seven months old. We started ACTH injections right away, and she was on them for nearly three months. For a while, she did fairly well. But when she turned three, the seizures began…

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Walk for LGS Research

Stepping Together for a Breakthrough!

2026 Walk Month Impact $39k+ raised for LGS Research  Over 425 participants across 11 walks nationwide Thank you for being part of this movement. Support Research Year-Round Together for a Breakthrough A Global Movement. Powered by Community. April is Walk…

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Illuminate for LGS Awareness

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…

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Having Conversations

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…

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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…

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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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Remembering Natasha

12/04/90 - 03/12/24

Natasha’s journey began with light, laughter, and love. At just five years old, she developed epilepsy, facing every seizure type imaginable. Over time, this cruel condition stole her ability to speak, swallow, and walk. Yet, through it all, Natasha’s spirit…

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