In Loving Memory of Jayden Burns

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…

More

PACIFIC Research Study

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…

More

Carisbamate for Seizures

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…

More

Caregiver Support

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…

More

The Skyway Study for Soticlestat

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…

More

STARS Research Study

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…

More

Ganaxolone (Ztalmy)

New Treatment for Seizures in CDKL5 Deficiency Disorder (a genetic cause of seizures that can lead to LGS)

What is Ganaxolone? 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. Ganaxolone (the…

More

Leaders in LGS Award

The LGS Foundation recognizes Those who have made a significant Impact in the LGS community The LGS Foundation appreciates and values our community’s commitment to ending the devastation and suffering caused by LGS and recognizes the significant impact of the…

More

Our Medical Science Advisory Council

meet the amazing doctors and scientists that make up our medical Science Advisory Council (MSAC) The amazing group of individuals that make up our Medical Science Advisory Council is taking a stand against Lennox-Gastaut Syndrome by helping our team in…

More

Halloween Masquerade Ball at Epilepsy Awareness Day at Disneyland to Raise Awareness of LGS

October 31st, 2022

Join us for the FIRST EVER Halloween Masquerade Ball at Epilepsy Awareness Day at Disneyland. This event is free to all registered Expo guests. Help us raise awareness of LGS. *Make sure to register for the Expo; you’ll get an…

More