Latest News

Walk ‘n’ Wheel for LGS Research

Stepping Towards the Cures, Together!

Each year, hundreds of community members mobilize to raise funds for the LGS Foundation’s “Finding the Cures, Together” Research Program. This vital program drives cutting-edge research that leads to new therapies and treatments for those impacted by LGS! Join Us…

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LGS Foundation Welcomes New Board President

  We are delighted to welcome Karen Groff as the new President of the LGS Foundation Board of Directors. Karen is a retired educator and long-time member of the LGS Community. As a teacher, elementary principal, and staff development coordinator,…

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LGS Learn From Every Patient Database

Help Us Find Better Treatments and Cures for LGS

What is a Learn from Every Patient Database? Implemented in 2023, the LGS Learn from Every Patient Database collects medical records about those with LGS to document the impact of LGS on a person’s health over their lifetime. This information…

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Meet Peter

After a traumatic birth, Peter seemed super healthy. At 11 months while driving I looked in my rearview mirror and caught a glimpse in his baby mirror of what looked like an eye roll up to the left. I thought…

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Research Study: Surgery or Medication for Lennox-Gastaut Syndrome (SOM-L Study)

Lennox-Gastaut syndrome (LGS) has no cure. Although current treatments may help reduce the number of seizures, none are expected to eliminate them entirely; these treatments are palliative. The main treatments include anti-seizure medications and some surgical approaches. While both types…

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Meet Andrew

Our Journey to an LGS Diagnosis

Andrew is our first child. I always point that out because I was in such a different place then. A place where I did not question, I did not really think about what happens when a baby is born with…

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In Memory of Jilleen(Jille) E.B.Harbaugh

9/10/1989 - 12/26/2023

Jille was a beautiful red-haired green-eyed baby girl. She was diagnosed with infantile spasms after having major brain surgery to remove an encapsulated cyst. The seizures did not respond to the medications available at that time. Eventually, she was diagnosed…

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In Memory of Matthew Jason Parham

3/07/2005 - 1/04/2022

Matthew Jason Parham was born on March 7, 2005. Matthew (also known as Matt, Matty, and Bubba), came into this world like most babies, with strong lungs, tiny fingers and toes, and nothing but wonder and curiosity for the world…

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Can anything good come from this LGS life? The answer for me is… Yes!

By Darla Davison

This is a question I’ve asked myself many times over the years. Through the constant ups and downs and watching my son, Aaron (age 35), suffer for decades, my answer has varied. In the end, I can see that my…

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In Memory of Mark Lewis McCaslin

5/9/1976 - 11/19/2017

On May 9, 1976, my brother Mark was born, it was Mother’s Day that year. Being an adopted child at that time, it wasn’t until about a week later that my parents knew of his birth and that he would…

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