2021 LGS Meeting of the Minds

Finding Disease-Modifying Therapies in LGS

Research Conference Outcomes:

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

Organizers:
Eric Marsh, MD, Ph.D. – Children’s Hospital of Philadelphia
Heather Mefford, MD, Ph.D. – St. Jude Children’s Hospital
Ann Poduri, MD, MPH – Boston Children’s Hosptial
Brenda Porter, MD, Ph.D. – Stanford University
Vicky Whittemore, Ph.D. – National Institutes of Health

Family Day Outcomes:

Over 80 family members from 3 countries attended this virtual discussion about finding disease-modifying therapies in LGS.

“We appreciate the opportunity to learn more about LGS therapies and research today and to share our family’s voice!” -Mom of an adult daughter with LGS

Organizers:
Tracy Dixon-Salazar, PhD – Mom of an adult Daughter with LGS
Kathy Leavens – Mom of a Son with LGS who passed away from SUDEP
Natalie Gilmore – Mom of a teenage Daughter with LGS
Karen Groff – Mom of an adult Son with LGS
Kayleigh Keen – Mom of a pre-teen Son with LGS
Jennifer Griffin – Mom of a teenage Son with LGS

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.

Download the Outcomes Reports

Supporters

Collaborative Supporter:

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

For more info contact research@lgsfoundation.org


Updated 6/29/22