Board of Governors

Jeni Stepanek
Executive Director, Mattie J.T. Stepanek Foundation

A noted advocate for children's and families' rights in health and education, Jeni Stepanek has spoken on television, radio and in print about disability, hospice, family support, parenting, writing, spirituality, peace, and many other topics, all while battling a rare form of muscular dystrophy. Her youngest son, Mattie, was a poet and peace advocate whose bestselling books have inspired millions. Mattie created poetry and essays from age 3 until he passed away in 2004 at age 13 from muscular dystrophy. Jeni recently penned the NY Times bestselling book, "Messenger: The Legacy of Mattie J.T. Stepanek and Heartsongs." She earned her doctoral degree in Early Childhood Special Education at the University of Maryland, specializing in anticipatory grief and family support.