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.

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:

Hiring an incredible Director of Operations to manage day-to-day logistics and improve our processes

Joining a transformative project management tool to decrease silos and improve teamwork

Hosting our LGS Research Meeting of the MInds to discuss disease-modifying therapies. The event also served to garner support and interest in LGS research from our community, families, and scientists alike

Initiating a request for applications (RFA) to fund new research projects

Increasing fundraising thanks to a strategic shift to emphasize the importance of research and cures

Participating in CZI-organized trainings to improve operations

Starting a major donor program

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

Lennox-Gastaut Syndrome (LGS) Foundation

An unrelenting search for better research and therapies

Research Progress & Capacity Building Updates

Science Funding

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