Meet Our Families

On this journey, you are Never Alone.

Our Little Ironman

Charles (age 10)

Ironman Dad Raising Funds to provide Crucial Medical Equipment to Kids and Adults with LGS Charles will be competing in an Ironman competition to raise funds and awareness for the LGS Foundation’s Elevate Patient Assistance Program to help individuals like…

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Seizures and Study: One Mother’s Journey to Cure Lennox-Gastaut Syndrome

How Tracy Dixon-Salazar, PhD, the executive director of the LGS Foundation, went from a new mother to a neuroscientist, and her decades-long quest to improve the lives of patients like her daughter, Savannah.

Many who make the decision to enter the medical science field are often driven by a desire to help others. Physicians take the Hippocratic Oath and swear to treat the ill and do no harm, and researchers are, many times,…

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In Memory of Joseph Michael Manson

01/05/2010 -04/14/2022

Joseph was born with a rare medical condition called cobolomine e abnormality he was the first in the US and first at birth in the world. Joseph fought a hard fight and showed them it can be done he got…

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In Memory of Johnathan Rush, Jr.

3/19/2004 - 10/01/2016

Johnathan was my first born. He was born premature and not breathing. Because of his traumatic birth, his brain endured an injury that caused a variety of disorders. One the many we would later discover was Lennox-Gastaut Syndrome. His journey…

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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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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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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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