4/22/1974 - 4/26/2022
Weeks beyond his expected due date, our amazing son Tad was born and together as a young family we took our first steps on a remarkable journey, a life most people could not imagine. A path of lifelong education of…
Our 2nd Biennial LGS Research Meeting of the Minds was an Overwhelming Success! Watch the short recap video from our Executive Director, Tracy Dixon-Salazar, PhD Over 150 people attended this two-and-a-half-day hybrid research meeting in Baltimore, MD to discuss…
1/29/1993 - 7/13/2018
Joshua was diagnosed at 9 months with LGS he had seizures daily and other medical issues. Joshua was a joyful child he loved music, being outside, and enjoyed being with mommy and daddy. He was in the bell choir for…
Andrew's LGS Journey
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…
Emma's LGS Journey
Emma was a few weeks shy of her 17th birthday when she had her first seizure. It all started with 3 tonic-clonic seizures, and by the end of that week, she was having a myriad of seizure types. Emma suffers…
2/27/2020 - 8/06/2023
Frederick Reese Fox – Freddie, Frode man, Babe, Frankie Beans, Al Franken, Frazzle, Freemont, Dr. Fronkenstein – was born right at the beginning of the pandemic in 2020. Nothing would ever be the same. A beautiful, shining soul in a…
Written By: Jennifer Griffin, Director of Family Support Just 6 months after we took the nation’s capital by storm for Rare Disease Week on Capitol Hill, the LGS Advocates were at it again in their local communities as part of…
RNS System Responsive Stimulation for Teens and Adults with Lennox-Gastaut Syndrome (LGS) Study
The purpose of the RNS System Lennox-Gastaut Syndrome (LGS) study is to generate preliminary safety and effectiveness data for brain-responsive neurostimulation of thalamocortical networks as an adjunctive therapy in reducing the frequency of generalized seizures in individuals 12 years of…
Our community is stronger with facts! When it comes to Vagus Nerve Stimulator therapy (VNS Therapy) for seizure reduction, do you know fact from fiction?
We are Stronger with Facts: Let’s stamp out VNS Myths! LGS is tough; finding information doesn’t need to be. That’s why we are helping our community separate fact from fiction around Vagus Nerve Stimulation (VNS) Therapy. Often, information on specific…
Over the past five years, LGS research has experienced significant advancements, providing hope for individuals and families affected by this complex disorder. At the LGS Foundation, we know that patient-driven research plays a vital role in driving research on topics…
