Meet Micah
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…
Latest News
Behind the Mystery of LGS on Lifetime TV
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 and the Chan Zuckerberg Initiative Rare As One Network
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…
Topiramate for Seizures in LGS
What is Topiramate? LGS is tough. Finding information shouldn’t be. That is why we provide information about this and other medications often used in LGS. We hope you find this information useful as you navigate your LGS journey. Topiramate, sold…
In Memory of Rebekah Selah Anglin
2/23/1987 - 3/24/2022
Rebekah was an emergency C-section in 1987. She progressed normally until, at 22 months, she suddenly experienced a horrible grand mal! There was several feet of snow outside, so the ambulance took a while! Her older brother by two years…
LGS Foundation’s 12 Days of Giving
Thank you for the many ways you give to the LGS Foundation. Because you give, we can give to others. We invite you to follow throughout December to celebrate 12 important moments we’ve impacted together. Please give, and share these moments…
Stellina Study for Diazepam Nasal Spray (Valtoco)
A Clinical Study for 2 to 5 Year Old Children With Epilepsy
The Stellina Study is a clinical study evaluating a single dose of diazepam nasal spray (VALTOCO) as a rescue medication in children aged 2-5 who have been diagnosed with epilepsy. The objectives of the study are to assess the pharmacokinetics…
Infantile Spasms Awareness Week
#ISAW
What is Infantile Spasms awareness week (ISAW)? Infantile Spasms Awareness Week (ISAW) is held annually on December 1-7 to raise awareness of Infantile Spasms (IS). ISAW is hosted by the Infantile Spasms Action Network (ISAN), a group of more than…
Living with LGS: Andrea’s Story
Hi, I’m Alejandra, Andrea’s mother, my beautiful angel who had a normal childhood until she was seven years old. I still remember waking up and hearing the sound that my little Andrea emitted, I thought she was drowning when I…
In Loving Memory of João Miguel Martins Nunes
3/17/1995 - 7/16/2020
Miguel was so sweet. Such a lovely baby! He used to smile and run all the time! He was born without any problem, but, suddenly, the seizures started and never went away. He didn’t talk anymore and was submitted to…