$1.1 million grant funds research on rare neurodevelopmental disorder
A $1.1 million grant from the parent-caregiver-led Rare Bird Foundation to Weill Cornell Medicine is supporting the launch of a natural history study for a rare neurodevelopmental disorder that causes developmental delays and seizures called MEF2C Haploinsufficiency syndrome (MCHS).
Currently, there are no specific therapies for MCHS, which affects about 400 people worldwide. Patients with the condition may experience developmental delays, difficulties communicating, and frequent seizures. The goal of the study, coined the Volāre Study, is to collect vital information about the ...