Protected: Community Needs Survey
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Protected: LGS & Associated DEE Research Accelerator
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His Strength, His Story
Grayson’s journey of resilience, love, and life with Lennox-Gastaut Syndrome.
Grayson’s story began like many others—full of hope, excitement, and dreams for his future. But over time, it became clear that his path would look very different from what we once imagined. Just one week before his third birthday, Grayson…
In Loving Memory of Maggie Grace Lyons
September 25, 2000 – November 19, 2016
Maggie Grace Lyons loved everyone she met. Though she never spoke a word, she said so much with her beautiful blue eyes. She loved being outside—singing, swinging, and spending time with her family. Maggie adored her stuffed animals, especially her…
When Light and Darkness Stood Side by Side
Kairo’s Journey with Lennox-Gastaut Syndrome
Kairo’s story began on the day of a total solar eclipse, a moment where light and darkness stood side by side. We didn’t know then how fitting that would be for his life. His seizures started when he was still…
2026 Rare Disease Week on Capitol Hill
Why Showing Up Matters
Every year, patient advocates, caregivers, and researchers from across the country travel to Washington, D.C. to attend Rare Disease Week on Capitol Hill, organized by the EveryLife Foundation for Rare Diseases. They bring one shared goal – to make sure…
In Loving Memory of Caitlin Elizabeth Cline
October 10, 2002 – March 8, 2019
My daughter, Caitlin Elizabeth Cline, was born on October 10, 2002. She was deeply loved and brought so much light into our family. There are too many memories of Caitlin to count. One of her brothers’ favorites was playing tag…
Lennox-Gastaut Syndrome (LGS) Foundation and NORD® Launch Natural History Study of LGS and LGS-Related Developmental and Epileptic Encephalopathies (LGS-DEE)
The Lennox-Gastaut Syndrome (LGS) Foundation and the National Organization for Rare Disorders (NORD) launched a study with global reach to research LGS and LGS-Related Developmental and Epileptic Encephalopathies (LGS-DEE), which are a group of rare diseases characterized by uncontrolled seizures,…
Kameron’s Story: A Life Defined by Strength and Love
Our journey with Lennox-Gastaut Syndrome (LGS) began on Thanksgiving Day in 2008, when my grandson Kameron was three years old. My son-in-law called while rushing to the emergency room and said Kameron seemed unconscious, was making strange sounds, his eyes…
Meet Charlie
For 42 years we assumed our beloved son Charlie was singular in his complex array of medical issues. It was only six months ago that we learned he belongs to a sliver of individuals with Lennox-Gastaut Syndrome. A simple notation…