Jeni Stepanek, Ph.D.

Position(s):

Speaker
Selection Committee

Jeni Stepanek is a noted advocate for children's, patients', and families’ needs and rights in health and education. She earned her Ph.D. and M.Ed. in Early Childhood Special Education from the University of Maryland, specializing in family support and bereavement experiences. Her B.A. is in Psychology. Jeni has spoken on television, radio and in print about disability, hospice, family support, parenting, writing, motivation, spirituality and many other topics, all while battling a rare neuromuscular disease. Her therapeutic approaches produced a tremendous poet in her youngest son Mattie, whose bestselling tomes inspired millions. A noted guest on Oprah, Larry King, the MDA Labor Day Telethon and other programs, Mattie created poetry from age 3 until he passed away in 2004 at age 13. All four of Jeni's children were affected by neuromuscular disease and are deceased. The Stepaneks had a special relationship with the Muscular Dystrophy Association; Mattie served 3 years as their National Goodwill Ambassador, and Jeni currently serves as a National Vice President. Jeni has garnered numerous awards and honors, and has an extensive list of publications, speeches and editing endeavors. Since 2005, Jeni has served as chairperson for the Mattie J.T. Stepanek Foundation in Rockville, MD where she and Mattie lived with their service dog, Micah. Rockville