Advancing Evidence-Based LGS Care Across the Lifespan
2025 LGS Research Meeting of the Minds: Advancing Evidence-Based LGS Care Across the Lifespan
Thank you for being an essential part of the 2025 LGS Research Meeting of the Minds. Your participation and dedication to advancing care for those living with Lennox-Gastaut Syndrome (LGS) made this conference truly impactful.
Key Insights
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Identifying Major Gaps in LGS Care: Discussions helped pinpoint critical gaps in LGS care and tangible approaches for addressing them.
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Connecting Diverse Stakeholders: Bringing together caregivers, researchers, clinicians, clinical trialists, advocates, and industry partners is vital in improving LGS care across the lifespan.
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Informing Future Research Strategy: The valuable insights shared during the conference will directly shape the LGS Foundation’s research priorities and funding decisions going forward.
What’s Next?
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Conference Recordings: A full recap of session insights and recordings will be available soon on YouTube and our website.
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Research Roadmap: Our team is synthesizing your feedback to refine next year’s Cure LGS 365 Research Grant strategy and investment areas.
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Ongoing Community Engagement: Stay tuned for upcoming webinars, roundtables, and events as we keep the momentum alive and continue working towards transformative LGS care.
Thank you to everyone who contributed your voice, energy, and expertise to this critical conversation. We look forward to collaborating with you as we chart the path toward groundbreaking care for those affected by LGS.
For any questions, please feel free to reach out to us at Research@LGSFoundation.org.
“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
This event is made possible with support from our friends at:
Patron Supporter
Premier Supporter(s)
Partner(s)
Supporter(s)
Interested in Sponsorship Opportunities? Email Info@LGSFoundation.org.
Advancing clinical research
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.
Finding Disease-Modifying Therapies
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, PhD
Key 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.
Updated 07/24/25 (KK)