During Prematurity Awareness Month, Once Upon A Preemie Calls for Action for Black Mothers, Babies and NICU Families

With Black preterm birth rates remaining disproportionately high, Philadelphia's “Meeting the Moment” conference asks a bigger question: What are we going to do about it?

September 29, 2026

PHILADELPHIA, PA — Behind every prematurity statistic is a family. A mother sitting beside an incubator. A father trying to hold his family together while learning an entirely new medical language. A baby whose first home is a neonatal intensive care unit. And healthcare professionals making decisions that families may remember for the rest of their lives.

 

This Prematurity Awareness Month, Philadelphia-based nonprofit Once Upon A Preemie, Inc. wants the national conversation to move beyond awareness. It wants action.

 

On November 16th - 17th, Once Upon A Preemie will bring Black preemie parents, healthcare professionals, clinicians, advocates and thought leaders together in Philadelphia for its 5th Annual Black Maternal Health and Neonatal Equity Conference: “Meeting the Moment.”

 

Nearly 380,000 babies were born preterm in the United States in 2024, according to the CDC Maternal Infant Health 2024 Report and March of Dimes Report Card. The national preterm birth rate remained at 10.4%, while the rate among babies born to Black mothers was 14.7%.

 

Those numbers represent more than a public health statistic to Jenné Johns, MPH. They represent families like hers.

 

Johns, founder and president of Once Upon A Preemie, is the mother of a micro-preemie whose own NICU journey helped inspire work that now supports families while educating healthcare professionals and advocating for more equitable maternal and neonatal care.

“When your baby is in the NICU, you don't experience a statistic, you experience fear, hope, exhaustion, questions and the need to know that your baby is receiving the very best care possible. Black families deserve more than awareness of the disparities we face. We deserve action. We deserve to be heard. And we deserve healthcare systems willing to turn what they've learned into meaningful change, says Jenné Johns, MPH and president of Once Upon A Preemie.”

 

What Does Accountability Look Like?

That question will be central to this year's conference.

 

Once Upon A Preemie is bringing together the people who deliver care and the families who experience that care to move practice-based solutions forward. The goal is to examine how healthcare delivery can improve.

 

Conference programming will address issues including:

• Respectful maternal and neonatal care
• Preemie skin health and feeding
• Caregiver wellness and support
• Systems-, community- and family-level interventions
• The lived experiences of Black birthing and preemie families

 

For Johns, “Meeting the Moment” means ensuring Black preemie families aren't treated as an afterthought in conversations about maternal health.

 

Once Upon A Preemie's work includes direct engagement with families, education and support for healthcare professionals and clinicians, and advocacy aimed at ensuring the experiences of premature babies and NICU families are represented in broader maternal-health policy and practice.

 

A Philadelphia Conversation with National Relevance

The two-day gathering begins Monday, November 16th, with Once Upon A Preemie's 4th Annual Party for Preemies fundraiser, from 5:00 PM - 8:00 PM at the African American Museum in Philadelphia, 701 Arch Street.

 

The 5th Annual Black Maternal Health and Neonatal Equity Conference follows on World Prematurity Day, Tuesday, November 17th, from 8:00 AM - 5:00 PM at Loews Philadelphia Hotel, 1200 Market Street.

 

Healthcare professionals and parent advocates will participate in keynote presentations, panels, breakout workshops, networking and a fireside chat designed to turn lived experience and professional expertise into actionable solutions.

 

For the families behind the numbers, the stakes extend far beyond one conference.

“A conference alone doesn't change healthcare. People do. The power of bringing families, clinicians, advocates and leaders into the same room is that we can leave with more than conversation. We can leave with a responsibility to do something differently, says Jenné Johns, MPH and president of Once Upon A Preemie.”

 

Register Today: HERE

 

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ABOUT ONCE UPON A PREEMIE, INC.

Once Upon A Preemie, Inc. is a Black woman-led nonprofit organization committed to advancing neonatal equity and centering the lived experiences of Black preemie families. Through education, advocacy, family engagement and healthcare professional development, the organization works to improve experiences and outcomes for Black birthing and preemie families.

 

For more information, visit onceuponapreemie.org.