Personal Stories

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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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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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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Two Peas in a Pod

A Sister's Special Bond

My sister, Robyn, and I are 4 1/2 years apart. We are like any other sisters…we share laughs, tears, and yes, we even argue! What sets us apart is our special bond. From the moment I saw my sister in…

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A Sister’s Love

Songs Inspired by her Brother Help Raise Awareness of LGS 

On November 1, local artists and LGS community members joined the LGS Foundation in Santa Monica, California to help raise awareness and funds for Lennox-Gastaut Syndrome. Meet the Artist: Christina Apostolopulos Hi, my name is Christina and my younger brother…

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Cash’s LGS Journey

Celebrating 100 Days of Seizure Freedom

Cash is the youngest of our three boys. He is the light of our lives and here to teach lessons to all of us.  Cash started having seizures when he was 3 weeks old. These were easily controlled with medications….

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Fighting for a Cure for LGS

Savannah (age 28) & Tracy's Story

According to my records, I’ve witnessed more than 40,000 seizures—a remarkable number, even for a medical professional. Still, I’m not a medical doctor. I’m a mom. I remember the first seizure vividly. I awoke to the sound of choking coming…

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