2021 LGS Meeting of the Minds

Finding Disease-Modifying Therapies in LGS

September 2021

 

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 Disease-Modifying Therapies in LGS.

“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

Organizers:

  • Eric Marsh, MD, Ph.D. – CHOP
  • Heather Mefford, MD, Ph.D. – St. Jude
  • Ann Poduri, MD, MPH – Boston Children’s
  • Brenda Porter, MD, Ph.D. – Stanford
  • Vicky Whittemore, Ph.D. – NINDS

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.


Read the Outcomes Report:

2021 LGS Research Meeting of the Minds Outcomes Report


View the Agenda 

WATCH CONFERENCE AND FAMILY DAY RECORDINGS HERE →

Supporters

Thank you, CZI!

This meeting is supported by the Chan Zuckerberg Initiative (CZI) as part of the Rare As One project.


Gold Supporters:


Silver Supporters: