Latest News

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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A Research Update from the Executive Director

Hope Abounds as Lennox-Gastaut Syndrome (LGS) Research Took Center Stage at the 2024 American Epilepsy Society Meeting Increased awareness and research positioned LGS as a major area of interest at this year’s AES Annual Meeting. LGS was highlighted as more…

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The DEEp OCEAN Study

A New Wave of Hope

The DEEp OCEAN clinical study is assessing the safety of the investigational drug, bexicaserin, and its potential to reduce the number of seizures in children and adults with Developmental and Epileptic Encephalopathies (DEE). Eligible participants include individuals aged 2 to…

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Palliative Care and Hospice Care: What is the Difference?

What are palliative and hospice Care? Palliative care and hospice care both focus on the comfort, care, and quality of life for individuals with a serious illness. The biggest difference between the two is that palliative care supports a person’s…

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Elevate Hope, Transform Lives

You Can Make a Difference for Families Impacted by LGS!

This holiday season, help us bring hope and essential support to those impacted by Lennox-Gastaut Syndrome (LGS). Your gift provides critical resources, education, and connection for families who need it most. Our goal is to raise $50,000, but we’ll only reach…

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U.S. Disaster Relief

We are committed to helping LGS Families impacted by natural disasters get the assistance they need. The following list contains links to resources and third-party websites that specialize in emergency disaster relief. You can also email us at familysupport@lgsfoundation.org and…

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Rare Across America 2024 – Advocacy in Action

The Advocates for LGS team is a small but dedicated group of caregivers who recognize the need for change at the systems level to provide a brighter future for their loved one with LGS. Every August during the congressional summer…

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Stamp Out CBD Myths!

Our community is stronger with facts! When it comes to CBD (cannabidiol), do you know fact from fiction?

Cannabidiol (CBD) is an exciting focus of medical research, popular media, and legislation related to cannabis. Its presence is becoming ubiquitous on the shelves of health food stores and search engine results for numerous medical conditions, but don’t believe everything…

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Lennox-Gastaut Syndrome Research Update

The Latest in LGS Research - July 2024

While there are no cures for LGS, current LGS Foundation-funded researchers are focused on two areas where their efforts can lead to improved lives for those with LGS and their families.  One of these areas is seizure control and another…

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