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In Memory of Rowan Wade Martin

11/25/2016 - 4/08/2022

There is so much. It was a long journey, yet not long enough all at once. For 5 years he consumed me. I will always miss him. I don’t even know what to say to explain our story. He was…

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Living with LGS: Julian’s Story

Lennox-Gastaut Syndrome (LGS) is a rare and severe epilepsy disorder that begins in early childhood and affects “approximately 48,000 children and adults in the United States” and “1 million worldwide,” according to the LGS Foundation. This constitutes for only 1…

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Josie’s Story

Every mother will say their child is special. But my sweet Josie truly is. She is the definition of a warrior.

My name is Zoe Rabun and I am the mother to our beautiful daughter, Josie Rabun (3). We first noticed unusual behavior with Josie at the age of 9 months. She would wake up in her sleep and have these…

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List of Treatments for Seizures

This page offers a list of FDA- approved treatments often used in those with LGS. Not all medications used in LGS are listed here. This list reflects U.S. FDA-approved medications. For info on epilepsy treatments in the U.K. visit this…

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Behind the Mystery of LGS

On Lifetime TV's the Balancing Act

Watch the Full Episode:   A Mom’s Journey to Understand Her Daughter’s Rare Disease Join Us as We Go Behind the Mystery of LGS Tracy Dixon-Salazar knows firsthand the devastating effect of Lennox-Gastaut Syndrome (LGS) — her daughter Savannah developed it…

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In Memory of Aidan Nichols Long

4/17/2004 - 1/14/2021

Aidan was born in Kalispell, Montana in 2004 and was a healthy, curious and very talkative little boy. He grew up loving the Montana way of life. He enjoyed camping, canoeing, collecting insects and fishing with dad. He loved books,…

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Virtual Walk ‘n’ Wheel for LGS Research

Stepping Towards a Cure, Together!

2022 Virtual Walk ‘n’ Wheel for Lennox-Gastaut Syndrome The LGS Foundation held its 7th Annual Walk ‘n’ Wheel for Lennox-Gastaut Syndrome on March 26th, 2022 to raise awareness and increase funding to accelerate research on Lennox-Gastaut Syndrome (LGS), a rare…

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In Memory of Brain Jason Roedl

6/26/1973 - 12/16/2016

Brian was the oldest of our three sons. He began having petit mal seizures (head drops) at 9 months old. On the day of his first MMR vaccination, he encountered his first tonic-clonic seizure. It lasted approximately 15 minutes. Until…

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In Memory of Matthew Leavens

9/16/1995 - 9/13/2013

Matthew’s spirit lives on today through having touched many lives in his almost 18 years. I noticed Matt’s seizures, which presented as stretching episodes, on our first day home from the hospital. After two months of the pediatrician telling me…

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Eli

Eli was born in the summer of 2003 at 34 ½ weeks old. He spent 7 days in the NICU due to a ventricular septal wall defect. By 3 months of age, it was evident that he was not meeting…

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