About Us

Deb Discenza gave birth to her daughter at 30 weeks gestation in 2003. From day one, she became a passionate advocate for premature infant support and never looked back. Whether it was founding the award-winning Preemie Magazine in 2005 or co-writing The Preemie Parent’s Survival Guide to the NICU, she recognized a significant gap in NICU resources, particularly within underserved communities. In 2020, she co-founded the Alliance for Black NICU Families, a non-profit dedicated to providing racial and health equity through initiatives like a free wearable breast pump. In 2023, she established the PreemieWorld Foundation, Inc. as its Executive Director, aiming to offer equitable access to patient education, including valuable books and long-term outcomes data for premature infants into their geriatric years. Additionally, in 2023, she founded the Books for Healing Partnership, Inc., where she serves as Executive Director, focusing on innovative patient education through children's stories applicable in all healthcare settings. When not engaged in these vital initiatives, Deb actively contributes or has contributed to various boards and committees, such as the International Neonatal Consortium, NICHD Neonatal Research Network Community Engagement Board, National Coalition for Infant Health, NICU Parent Network, International Children’s Advisory Network, Kindred 360, and The Skylar Project.

A former children’s librarian, Jenny has a background in library science and experience in security services for hospitals and public safety. Today, Jenny serves as the co-founder and Vice President of PreemieWorld Foundation, Inc., and is the Operations Manager for The Books for Healing Partnership. As a widowed single mother of two boys, Jenny's personal journey is closely connected to her professional efforts in providing premature infant support. Her youngest son, Joshua, was born a 26-week micro-preemie, spending 129 days in the neonatal intensive care unit (NICU), and continues to face the challenges of prematurity even years later. Jenny is deeply committed to raising awareness about prematurity, advocating for health equity, and supporting underserved communities. She shares her insights on grief and widowhood through her blog, 'A Warrior’s Battle,' on Facebook, while her experiences in the NICU with Joshua are captured in her blog posts titled 'The Year of the Dragon.' In addition to blogging, Jenny is a published author and contributes to various parenting and special needs parenting magazines. Recently, she wrote her first children's book designed specifically for the NICU, titled 'It’s a Kangaroo Thing.' This story not only promotes Kangaroo Care but also fosters bonding in the NICU and encourages parents to read to their preemies, providing valuable NICU resources for families.

Amelia is a mother of six, including five boys and her beloved daughter Emma Rose, whom she carries in her heart. Emma's premature birth and passing profoundly altered Amelia's life, leading her to transform that loss into a purposeful mission. For six years, she founded and led Emma's Footprints, a national nonprofit dedicated to supporting families during NICU stays and providing premature infant support after loss. She developed and maintained partnerships with hospitals, medical staff, and clinical organizations nationwide, spearheaded fundraising initiatives through donor cultivation, corporate sponsorship, and community events, and authored invaluable NICU resources and bereavement materials that hospitals across the country have adopted for families facing pregnancy or infant loss. With over 15 years of experience in nonprofit program development and community engagement, Amelia has forged strong relationships and built the necessary structures that organizations need to grow. As a seasoned speaker, she has shared her insights on maternal health, NICU family support, and nonprofit program development at more than 50 events, including those hosted by the March of Dimes and Riley Children's Hospital. Amelia's family includes two sets of twins born prematurely: Alex and Emma, who came into the world at 31 weeks, and Cameron and Christian, born at 34 weeks, as well as her youngest two, Mattie and Tucker. This personal NICU experience, coupled with the heart-wrenching loss of Emma, fuels her unwavering commitment to this vital work. Outside of her advocacy, Amelia also dedicates time to coaching gymnastics and cherishing family adventures, bringing the same patience, structure, and encouragement to both her family's journeys and her support for families in crisis through initiatives like the PreemieWorld Foundation.