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Research Roundtable Discussion Showcases Advances Towards Solving the Mystery of LGS

New LGSF Logo (PRNewsfoto/LGS Foundation)

News provided by

LGS Foundation

Nov 29, 2021, 09:00 ET

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SAN DIEGO, Nov. 29, 2021 /PRNewswire/ -- On December 3, The Lennox-Gastaut Syndrome (LGS) Foundation will host a LGS Research Roundtable at the American Epilepsy Society's annual meeting. The event will bring together hundreds of researchers, clinicians, and families to discuss the latest in LGS research.

"While there is no cure for LGS, there is a hopeful path forward," said Dr. Tracy Dixon-Salazar, the LGS Foundation's Executive Director and mother of an adult living with LGS. "How we treat LGS has remained roughly the same for the last 30 years - we try treatment after treatment and hope one of them might work. Those living with LGS are in desperate need of research that targets the root causes of LGS, as well as seizures. Our goal is to make that happen."

With only a tiny fraction of public and private funds going towards research on LGS, families of the more than one-million people with LGS worldwide worry that lifesaving, stabilizing treatment may not come into fruition in their loved one's lifetime. The LGS Foundation's research grant program and roundtable discussions are combating these fears. Since 2013, the LGS Foundation has awarded more than half a million dollars in funding for thirteen projects around the world. In addition to critical funds, the LGS Foundation has also created a network of researchers invested in learning from one another and driving research towards disease-modifying therapies for LGS.

"We are excited to gather the brightest minds tackling LGS across the globe," said Dixon-Salazar. "And, we believe that now more than ever, science has reached a level where it can begin to solve the mysteries of LGS."

The LGS Research Roundtable will showcase the research studies that the LGS Foundation supported over the last several years and provide a space for collaboration on ways to further this important work. The following projects will be presented:

  • EEG and Human Studies of the LGS Network, University of Melbourne
  • Chd2 Organoids/Patient-Derived Neurons of LGS and pre-LGS, University of Texas
  • Chd2 Mouse Model of LGS and pre-LGS, University of California
  • Dnm1 Mouse Model of LGS and pre-LGS, University of Vermont
  • Zebrafish Models of LGS and pre-LGS, University of Richmond

The Research Roundtable follows a two-day LGS Meeting of the Minds conference that the LGS Foundation hosted in September where nearly 250 researchers and 80 families gathered to discuss advancements in LGS care. Two key learnings surfaced from the discussion: (1) we must learn from every patient and use real world data to transform how we treat LGS, and (2) we must understand how to treat the seizures and the underlying pathogenic brain network of LGS. Keynote speakers Dr. Anup Patel from Nationwide Children's Hospital and Dr. Scott Baraban from the University of California, San Francisco will expand upon these findings and ways the LGS community can create a hopeful path forward, including how to apply for the LGS Foundation's 2022 grant funding.

Registration is open for the LGS Research Roundtable that will take place in-person and virtually. Registration to attend in-person is still open, but seats are limited. To watch virtually, visit the LGS Foundation website on December 3rd at 11:00am CT.

About the LGS Foundation
LGS is a rare, severe, life-threatening, epilepsy that leads to uncontrolled seizures, significant brain damage, and a lifelong dependence on others for care. The LGS Foundation is the leading global organization committed to improving the lives of those impacted by LGS through advancing research, awareness, education, and family support.

SOURCE LGS Foundation

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