MED13L Foundation to Launch Natural History Study of MED13L Syndrome with Boston Children’s Hospital
The MED13L Foundation has awarded a nearly $250,000 grant to launch the MIND Study (MED13L Syndrome Investigation of Natural History and Development) at Boston Children’s Hospital’s RSZ Translational Neuroscience Center. This three-year initiative, led by Dr. Maya Chopra, will collect data from 30 individuals with MED13L Syndrome to better understand the condition and prepare for future clinical trials.
As part of the RSZ TNC’s broader ACTION Initiative, the MIND Study aims to close critical knowledge gaps by capturing longitudinal data and establishing clinical trial readiness. Up to 20 participants may complete assessments during the July 2025 MED13L Research and Family Meetup in Waltham, MA.
This collaboration marks a major milestone in advancing treatments and improving care for individuals with MED13L Syndrome. Additional enrollment details will be shared with families soon.
