✨Our first trip to New York City for the MEF2C Landmark Study at Cornell was a success! ✨
 

For those who don’t know, Noah has been chosen as one of the few children worldwide to participate in the Volāre Study—a groundbreaking natural history study for MEF2C Haploinsufficiency Syndrome (MCHS).

MCHS affects about 400 children worldwide and currently has no specific therapies.

This study was funded by a parent-led Rare Bird Foundation and conducted at Weill Cornell Medicine, is designed to give researchers a deep understanding of how kids with MEF2C grow, develop, and function.

The information gathered over the next two years and three more trips will create a strong foundation for future clinical trials and experimental therapies already in development.

We’re humbled that Noah is helping pave the way—not just for himself, but for every child and family in the MEF2C community.  This is more than research; it’s hope in motion. ❤️