RAO Network

Lennox-Gastaut Syndrome (LGS) Foundation

Female scientists, clinicians, and LGS Foundation staff in front of a white step-and-repeat backdrop at AES 2018
Lennox-Gastaut Syndrome (LGS) Foundation staff joined members of its professional advisory board, scientists, and clinicians for a quick photo op in front of the American Epilepsy Society backdrop at AES 2018. Photo courtesy of 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. 

The LGS Foundation promises to be unrelenting in its search for better research and therapies.

Learn How We Support Science

Science Funding

Learn more about funding apportunities.

Hear Rare Disease Stories

Hear Rare Disease Stories

Listen to The Story Collider podcast featuring stories about patients who are driving progress against rare disease.