First-ever Lennox-Gastaut Syndrome Research Meeting of the Minds will Explore Disease-Modifying Therapies
SAN DIEGO, Sept. 8, 2021 /PRNewswire/ -- On September 13-14, the Lennox-Gastaut Syndrome (LGS) Foundation will bring together more than two hundred scientists, clinicians, community partners, and families living with LGS for the first of its kind LGS Research Meeting of the Minds: Finding Disease-Modifying Therapies.
During this two-day virtual conference, scientific experts from around the world will share what is currently known about LGS and discuss what emerging research is telling us about this devastating, pediatric-onset neurodevelopmental disorder that occurs in 1 in 50,000 children. The goal of this important meeting is for patient families and researchers to work together to identify and prioritize gaps in LGS research and to create a patient-driven research network. Findings from this meeting will pave the way for future disease-modifying therapies and cures for LGS.
"I am extremely excited about this critical meeting," said Dr. Tracy Dixon-Salazar, Executive Director of the LGS Foundation and mother of a 28-year-old daughter who has been living with LGS since she was a toddler. "Scientific research is often done in a silo and patient families are regularly not involved in the process of determining what the highest priority needs are in their community. We want to change that. Patient families are also LGS experts and the Meeting of the Minds series will include their crucial voices."
The scientific discussion with all stakeholders will take place on September 13-14 and will be followed by a family-focused discussion on September 18th.
"This is the first of many LGS Research Meetings of the Minds that we plan to convene," says Natalie Gilmore, Board President and mom of an adult daughter with LGS. "We plan to host seminars throughout the year on specific topics as a way to keep the conversation going between larger meetings. It's so important for scientists, patient families who are experts on living with the disease, and the LGS Foundation, which funds research grants, to continue the conversation on an ongoing basis."
This meeting has been made possible by a generous grant from the Chan Zuckerberg Initiative (CZI) as part of their Rare As One Program.
Meeting presentations will be live-streamed and may be attended by anyone.
Learn more @ www.LGSFoundation.org/lgs-foundation-meeting-of-the-minds
About LGS
Lennox-Gastaut Syndrome is a rare neurodevelopmental disorder characterized by severe, childhood-onset epilepsy and specific patterns of abnormal brain waves that can be seen on an electroencephalogram (EEG) seen. The syndrome is usually diagnosed before the age of 8 years old and those with LGS suffer from frequent, uncontrolled seizures, more than one seizure type, resistance to medication and other therapies, and significant intellectual disability. It is estimated that approximately 50,000 people in the United States, and more than 1 million worldwide, have LGS.
About the LGS Foundation
The LGS Foundation's mission is to improve the lives of individuals impacted by LGS through research, family support programs, and education. To learn more about LGS or to support our efforts visit LGSFoundation.org
SOURCE LGS Foundation
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