Sept. 14-16, 2023 at Hilton Baltimore Inner Harbor
Thank you for helping us create a vision to advance clinical research in LGS!
The LGS Foundation hosted its second Meeting of the Minds, Sept. 14-16, 2023, to discuss how we can Advance Clinical Research in LGS.
This hybrid conference brought together over 150 researchers, healthcare providers, clinical trialists, scientists, advocates, caregivers, and industry partners to discuss methods to measure seizure and non-seizure outcomes (communications, behavior, sleep, and other key areas) in LGS clinical research and trials.
Learnings from this meeting will help guide the LGS Foundation’s funding strategy in 2024 and beyond.
“We are having real, honest conversations about what we need to do… this is how we will make a difference for patients with LGS.
I am excited about some of the pharmaceutical treatments that are out there to help treat seizures, and I am really excited to have a better understanding of how devices or neurostimulation can actually improve outcomes for Lennox-Gastaut Syndrome.
But more importantly, what will make the difference is the community continuing to work together. Together, we can change the landscape for patients with LGS.”
– Anup Patel, MD
Special Thanks to Our Organizers:
Dr. Scott Perry, Cook Children’s Hospital, Fort Worth, TX
Dr. Elaine Wirrell, Mayo Clinic, Rochester, MN
Dr. Peter Crino, University of Maryland, School of Medicine, MD
Dr. Jim Wheless, Le Bonheur Children’s Hospital, TN
Previous Research Conferences:
In September 2021, over 250 researchers and family members from 7 different countries joined the LGS Foundation for a 2-day discussion focused on finding LGS Disease-Modifying Therapies.
“This meeting was critical! It not only brought the research and family communities together, but it has helped guide the LGS Foundation’s support and research funding strategy MOVING FORWARD.” – Tracy Dixon-Salazar, PhDKey Learnings:
- LGS Families are living in constant crisis, and most with LGS require help with every aspect of their daily lives. We need a transformative treatment!
- Patient families compare current LGS treatment to throwing darts at a dartboard, but we are not learning from the dart patterns. Learning from every patient is crucial for understanding how to treat LGS today.
- There is an underlying, unifying LGS epileptic network which is an anatomical structure made of groups of cells, channels, and molecules. We need to understand and treat the LGS network.
- We’ve been treating LGS the same way for 30+ years. We treat seizures and hope for the best. We need to change this! We need to treat the whole syndrome, not just one symptom.