Blog
Addressing Challenges in Neonatal Product Development – FDA and MCERSI Joint Session
The Food and Drug Administration (FDA), in collaboration with the University of Maryland Center of Excellence in Regulatory Science and Innovation (MCERSI), hosted the Advancing the Development of Pediatric Therapeutics (ADEPT) 10: Addressing Challenges in Neonatal Product Development – Leveraging Rare Disease Frameworks in Washington DC last week.
A Milestone for NICU Parent Network: Our First Hill Day in Washington, D.C.
This past July, the NICU Parent Network (NPN) proudly hosted our very first Hill Day in Washington, D.C.—and what an unforgettable experience it was! Organizing such an event was no small undertaking, but it was worth every moment.
The 2025 iCAN Summit: A Global Celebration of Youth Voice in Pediatric Research
The 2025 iCAN Summit was extraordinary! At its heart, iCAN is powered by kids. Our chapters consist of passionate young people and their families who are dedicated to understanding, improving, and advocating for pediatric medicine, research, and innovation. We believe every child deserves to be heard, and our mission is to amplify their voices and experiences in spaces where it truly matters.
President of the NICU Parent Network
I am honored and excited to introduce myself as the incoming President of the NICU Parent Network, effective January 1, 2025. This organization holds a special place in my heart. My journey as a NICU parent leader has been deeply intertwined with my own family’s story. Twelve years ago, I delivered my daughter at just 23 weeks gestation. Our journey together has shaped my commitment to supporting NICU families and advancing the mission of this incredible organization.
World Prematurity Day 2024: News and Resources
November 17th is World Prematurity Day and the entire month of November is Prematurity Awareness Month. Preterm birth is when a baby is born too early, before 37 weeks of pregnancy have been completed. Current statistics show that 1 of every 10 infants born in the United States is born too early. Babies born too early (especially before 32 weeks) have higher rates of death and long-term medical complications and disabilities. Babies born before 26 week gestation are called Micro Preemies and are likely to have greater complications from their early birth. My daughter Joy is a Micro Preemie.
AngelEye Health Brings Together NICU Leaders From Around The USA
I recently joined many NICU leaders on a quick but valuable visit to Nashville, to tour the AngelEye Health office space and participate in their Education Day. AngelEye Health is a company that creates technological devices to improve neonatal healthcare outcomes and patient experiences for babies and families. We are all so happy that we attended.
The 2024 International Neonatal Consortium Conference, by C-Path, was a Success!
Last week, the Critical Path Institute (C-Path) hosted the inaugural Global Impact Conference, at the Washington Marriott at Metro Center in Washington, D.C. This landmark event brought together more than 300 industry leaders, regulatory agencies, academic experts, and patient advocacy groups, all dedicated to advancing drug development and regulatory science for rare diseases. The International Neonatal Consortium, a subgroup of C-Path, also hosted their one day conference, of which I opened their Bronchopulmonary Dysplasia session.
Mom Congress and Hill Day 2024
A few months ago I participated in an event on Capitol Hill in Washington DC that was entirely made up of moms who advocate for legislation that supports babies and families. This event is called “Hill Day” and is sponsored by Mom Congress. Mom Congress is the policy organization for moms in the U.S. – a mother’s membership organization that is addressing the most pressing policy issues of motherhood.
NICU Volunteer Coordinators Are Indispensable
In contemporary healthcare settings, the role of a Neonatal Intensive Care Unit (NICU) Volunteer Coordinator is indispensable, as it embodies the essence of compassionate care and community support for families navigating the challenges of premature births and neonatal health complications.
New York Educational Policy Leadership Program 2024
The New York Education Policy Leadership Program (NYEPLP) is a unique, yearlong professional development experience that focuses on policy, leadership, and networking. The program explores timely education policy and leadership issues at the macro, strategic level through immersive experiences and virtual, interactive sessions. NYEPLP Fellows gain a broad view of policy issues and implications, and better understand the dynamics of strategic leadership.