My daughter Olivia was diagnosed with the most severe form of life-threatening epilepsy in November of 2021, Lennox-Gastaut syndrome. This was a known possibility since she experienced a severe traumatic brain injury at birth resulting in seizures that evolved into…
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…
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…
7/31/1976 - 5/08/2023
Allison was diagnosed at Johns Hopkins Kennedy Institute in 1978 at 18 months old. She had numerous seizures of every type. Through all of the difficulties, she remained sweet and playful, laughing uproariously at sounds like sneezes, coughs and hiccups….
2008 to 2023: 15 Amazing Years of Progress!
Nobody Walks the LGS Journey Alone Formed in 2008, the LGS Foundation has since grown into an internationally recognized nonprofit organization that is improving the lives of those impacted by LGS through advancing research, awareness, education, and family support. The…
11/07/2017 - 11/30/2022
When Daniel was approximately 4 months old, we noticed that he was not meeting all of his developmental milestones. Around this same time, Daniel was hospitalized and diagnosed with Infantile Spasms. This was the first of many hospital stays to…
Rare Disease Week on Capitol Hill
On the last day of February every year, we pause to honor those who are living with, or have passed away from, a rare disease. The last day of February after all, is the rarest day of the year. It’s…
Micah was born a healthy and happy child. Everything was fine until around one year old. I started to notice things he could do he was having a hard time with or not doing at all. We went for test…
The Balancing Act on Lifetime TV Celebrates Rare Disease Day Watch Now: The Lennox-Gastaut Syndrome Foundation: Working Together to Find a Cure Executive Director of the LGS Foundation Dr. Tracy Dixon-Salazar sits down with Montel Williams to discuss the Foundation’s…
The LGS Foundation is proud to be part of the Chan Zuckerberg Initiative (CZI) Rare As One Network – a group of 50 patient-led organizations that are accelerating research and driving progress in the fight against rare diseases. The LGS…
