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…
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…
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,…
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…
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…
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…
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…
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…
