07/17/1997 - 05/11/2024
Megan was lovingly known as “doubly rare”. She lived with the rare epilepsy syndrome Lennox-Gastaut Syndrome, secondary to her rare genetic anomaly, PURA Syndrome. Megan had the sweetest soul, her smile and soft presence impacting all who knew her. She…
For Children Two-Years of Age and Younger
The Jazz Piccolo Study (Piccolo means “little one” in Italian) is investigating the safety and effectiveness of cannabidiol (or CBD oral solution) in infants (2 years of age and younger) with Tuberous Sclerosis Complex (TSC), Lennox-Gastaut Syndrome (LGS) or Dravet…
Olivia's LGS Journey
Our warrior Olivia is 21 years old. Olivia started experiencing seizures just before her second birthday. After over a decade of uncontrolled seizures, we needed help and decided it was time for another opinion. Olivia’s new doctor ordered a complete…
Rare Disease Week 2024
Every year on the last day of February, the rare disease community unites as one to observe Rare Disease Day. February is a rare month with only 28 days and this February was ultra rare with the extra day, February…
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…
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…
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…
This study is in progress and actively recruiting
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…
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,…
Peter's LGS Journey
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…
