The PreemieWorld Foundation was founded on October 25, 2023, coincidentally sharing the birthdate of one of its co-founders, Deb Discenza! The foundation is dedicated to offering resources, education, and support to families with premature infants, with a particular focus on underserved communities. 

Deb Discenza’s Background:

Deb Discenza is an author and global advocate for preemie and NICU families. She co-founded the PreemieWorld Foundation, which focuses on supporting underserved populations, including families with premature infants. Deb Discenza gave birth to her daughter at 30 weeks’ gestation in 2003, which led her to become passionate about raising awareness for preemie families.

PreemieWorld Foundation Vision & Key Initiatives:

The PreemieWorld Foundation’s core initiatives aim to “to create and curate equitable access of underserved populations to patient education, advocacy tools and outcomes data specific to the preemie population.”1 These initiatives include:

1. Preemie Showers by PreemieWorld, grants for underserved NICUs or organizations to have special baby care packages which include a variety of items, such as educational books for parents, children’s books for reading to infants in the NICU (a practice proven to be beneficial), and products for new caregivers and their infants. Partnerships with companies such as Lansinoh have allowed the foundation to include practical items such as nipple cream samples. The aim is to provide tangible support that fosters hope and connection for families navigating the challenges of prematurity.

In its first year (2023-2024), this initiative focused on the United States, partnering with two organizations: the University of Mississippi, which houses a level-four NICU serving a large African American population, and The Skylar Project, a Black-led organization based in Alabama and founded by a mother who tragically lost her premature child in the PICU. Through these partnerships, the foundation delivered care packages to three hospitals, exceeding their initial goal!

2. Preemie Crystal Ball, a predictive outcomes portal that uses machine learning to predict potential health outcomes for premature infants. This system integrates large data sets with machine learning to create predictions about the health trajectory of preemies based on information reported directly by parents. Through parents (as well as former patients now adults) inputting patient reported data into the Preemie Crystal Ball Portal that data is compared against other data to generate predictive insights. The result is a PDF report that parents can take to their healthcare providers, to help start meaningful discussion to ensure high-risk conditions can be addressed earlier.

Outside of the benefits to preemie caregivers the Preemie Crystal Ball aims to support researchers and drug development by pooling extensive data together to identify patterns. 

3. Preemie Parent Grants, this program supports parents of preemies in need, offering assistance with everything from baby clothes and car seats to formula, breast pumps, and sometimes even funeral expenses. It continuously works to expand and address additional needs.

 

Deb Discenza hopes to expand the assistance grants in the future to support adults who were born prematurely. She explains, “A lot of these [former preemies] face significant struggles. If they don’t have enough resources to pursue something—like a certification in computer technology—maybe we can help them cover the cost and support them.” 

The PreemieWorld Foundation through initiatives like Preemie Showers by PreemieWorld, Preemie Crystal Ball, and Preemie Fund Assistance Grants is pioneering a future where all families affected by prematurity have the support, resources, and knowledge they need to navigate the challenges they face! While the PreemieWorld Foundation focuses on advocacy, education, and resources, Preemie Sensor works to provide cutting-edge feeding management solutions to ensure premature babies receive the optimal nutrition they need to thrive. Together, we share a commitment  to improving care, reducing the long-term challenges faced by preemies, and accelerating progress towards a healthier future for these vulnerable infants.

---

Deb Discenza has authored a comprehensive guide for preemie parents, titled The Preemie Parent’s Survival Guide to the NICU. The book is available for purchase on Amazon through the following link: The Preemie Parent’s Survival Guide to the NICU : Teaching You How to Survive and Thrive in the Neonatal Intensive Care Unit.