On July 17th, 2024, the Foundation held a Patient-led Listening Session with the Food and Drug Administration.

The objective of the session was to provide FDA staff with an opportunity to hear about the wide spectrum of experiences and perspectives of various patients and families living with DLG4 SHINE in order to understand the complexity of the disease and its impact on their daily lives, what they would consider meaningful treatment outcomes, and their risk tolerances to achieve said outcomes.