#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…
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…
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…
It is a pleasure to introduce Our Board of Directors to You Our Board of Directors brings a wealth of experience and expertise to the LGS Foundation, united by their passion for our mission to end the devastation and suffering…
9/14/2020 - 9/25/2022
Jayden was diagnosed with epilepsy at four months old. He has been through many hospital stays. Also, changing the dosages of his medicine. Which wasn’t working. In April of 2022, he was diagnosed with LGS. He was such a strong…
NOT RECRUITING
The PACIFIC Study is a clinical trial for a drug called LP352. This study will assess the safety and tolerability of this drug as well as examine changes in seizure frequency over the 90-day treatment period. The study plans to…
What is Carisbamate? 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. Carisbamate (the…
Care for the Caregiver
Being a caregiver for a loved one with LGS is a commitment unlike any other. Caregiving requires limitless amounts of energy, empathy, and patience. While most caregivers will tell you that taking care of a loved one is a genuinely…
A Clinical Trial Open to Those With Seizures Associated with LGS
The Skyway Study is a Phase 3 clinical research study of an investigational medication for children, teens, and adults diagnosed with Lennox-Gastaut Syndrome (LGS) who are currently using 0-3 anti-seizure medications to manage symptoms and are still experiencing seizures. The…
A Clinical Trial Open to Those With Seizures
The STARS (Stand Together Against pRolonged Seizures) Research Study is a clinical trial for a drug called Alprazolam, which is sometimes used to treat seizures. Alprazolam is the active ingredient in Xanax, a commonly known drug. This study is a…
