Lennox-Gastaut Syndrome (LGS) Foundation
An unrelenting search for better research and therapies
Christina SanInocencio started the Lennox-Gastaut Syndrome (LGS) Foundation 12 years ago after reflecting on the isolation and lack of support her family endured during her brother’s diagnostic journey with LGS.
LGS is a rare neurological disorder that causes damage to the brain as seizures go uncontrolled. The emergence of the hallmark “slow spike and wave” EEG pattern (a specific abnormal brain wave pattern), predominantly between 2 to 5 years of age, is a sign that seizures are pathogenically altering brain development and a short time window exists to stop them before irreparable damage is done.
The LGS Foundation is building a network of researchers, clinicians, and patients to develop shared research priorities and co-develop new therapies. It aims to develop its strategic research vision around patient need and to be inclusive of patient voices. The LGS Foundation promises to be unrelenting in its search for better research and therapies for its community.
Research Progress & Capacity Building Updates
Thanks to the Rare As One Network the LGS Foundation has been able to achieve many important milestones such as:
“The LGS Foundation promises to be unrelenting in its search for better research and therapies.”