One year closer to a world without necrotizing enterocolitis
The NEC Society is the world’s leading nonprofit organization dedicated to necrotizing enterocolitis (NEC). We are led by a global community of patient-families, clinicians, and scientists. Together, we are accelerating NEC research, education, and advocacy to transform what is possible for infants and families.
Cole
2025 was a year of momentum
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I am filled with hope, gratitude, and awe as I reflect on the NEC Society’s work and community in 2025.
Our international movement uniting families, clinicians, scientists, and companies generated the most impactful NEC Awareness Month and the world’s largest NEC Symposium.
Together, we are advancing the research, tools, and strategies urgently needed to protect every baby from the devastation of necrotizing enterocolitis. Our remarkable progress and impact are fueled by the experiences and needs of families and clinicians caring for our babies.
Thank you for believing in the NEC Society’s vision and being part of this incredible community. Thank you for allowing me to share my son, Micah, with you, and for sharing your stories, babies, hearts, and time with me. I feel deeply honored and privileged to be on this journey with you.
Jennifer Canvasser
Founder, Executive Director
NEC Society
Advancing science for a world without NEC
We launched the NEC Registry
The NEC Registry is a platform for patient-families to share their experiences with NEC, from diagnosis to the long-term physical, social, and emotional impacts of the disease. This is a powerful opportunity for individuals and families affected by NEC to contribute directly to research that will help us understand this devastating disease.
 “We urgently need better strategies to prevent and treat NEC. At the NEC Society, patient-families work alongside researchers and clinicians, which inspires our broader community to collaborate.”
Ravi Patel, MD, MSc, NEC Society Scientific Advisor and neonatologist at Emory University and Children’s Hospital of Atlanta
NEC Research Incubator
What began in 2022 as a small group of clinician-scientists sharing NEC research has grown into a global collaborative of nearly 200 members across disciplines, united by their dedication to building a world without NEC.
Conference Highlight
Pediatric Academic Societies (PAS) NEC Club
The 2025 PAS NEC Club, hosted by the NEC Society, brought together hundreds of clinician-scientists from around the world and explored the exceptional nutritional needs of babies at risk of, and diagnosed with, NEC.
The largest NEC Symposium
Uniting the global community for a world without NEC
​​The NEC Symposium in Chicago was the world’s largest meeting dedicated to necrotizing enterocolitis (NEC). Over three days, more than 250 clinicians, researchers, and patient-families came together to advance understanding, prevention, diagnosis, and treatment of NEC.
The meeting provided a transformative learning experience for renowned leaders, clinicians, researchers, and trainees, while centering patient-families in every conversation.
 “This is the most amazing meeting I have been to in my entire career. The power of having families, clinicians, and researchers together is unmatched in the other meetings we attend as physicians and healthcare providers.”
Aloka Patel, MD, NEC Society Scientific Advisor; Chief of Neonatology; Research Director for Neonatology, Rush University Children’s Hospital
“I have dedicated my career to infants at risk of NEC and more than a decade to the NEC Society. The NEC Symposium is a rare opportunity to collaboratively confront and break down barriers to move closer to a world without NEC.”
Jae Kim, MD, PhD, NEC Society Scientific Advisor; Director of Neonatology at Cincinnati Children’s Hospital
Family-Centered Impact
In 2025, we strengthened partnerships and reached more families than ever before. We also developed new educational resources to empower families to advocate for their child. The NEC Society is an essential resource and trusted leader in the NEC community for families and clinicians alike.
We distributed 600+ family resource boxes to NICUs across the US
Our Family Resource Boxes provide evidence-based information about NEC and resources to empower families. Thanks to the unwavering support of partners like Medela, our boxes are in more NICUs, reaching more families than ever.
 “The NEC Society’s resource box for bereaved families helped us put words to how we were feeling and how to tell those around us to love and support us. It continually reminds us that we are Gabriela’s parents even if she is no longer here.”
Tabitha Pazmino, Mom of Gabriela, NEC Society Patient-Family Advisor
Expanding family education through partnership
In partnership with the Children’s Hospitals Neonatal Consortium NEC Focus Group, we developed new resources to guide families at risk of or affected by NEC. These are the first resources designed to reach families before diagnosis, sharing essential information about risk factors and potential early warning signs to help build a world without NEC.
Breaking down medical jargon for families
To meet the needs of our community, the NEC Society created a NEC glossary that simplifies complex medical terminology and empowers families to better understand their baby’s care in the NICU.
Preparing for the world's first in-person Family NEC Summit
 In 2026, we will build off the momentum of the NEC Symposium to host the world’s first in-person Family NEC Summit — a space for families to connect, learn, and accelerate our mission, together.
 “It’s so great to have a stage to tell my son’s story, and incredible to be around parents who have gone through what I went through—who understand that pain in a totally different way. And to meet parents who have been able to take their children home and watch them grow, to hear about the challenges and the successes of that. To have different perspectives together has been extremely inspiring.”
Nicola Juri, Mom of Ronan, who tragically passed away from NEC, speaking about the NEC Symposium; NEC Society Board Member
Addressing families’ need to transform their pain into power
Families impacted by NEC collaborate with clinicians and scientists at the NEC Symposium because it is essential to integrate the lived expertise of families so we can better understand, prevent, diagnose, and treat NEC.
We launched the first NEC Symposium in 2017, and it is now the world’s largest, most impactful scientific meeting on NEC. With your support, we can build an equally powerful experience for families with the Family NEC Summit.
 “I had never met another family affected by NEC until I became part of the NEC Society. The NEC Symposium was so moving and powerful—to be not only with families who have also lost their children to NEC, but also with clinicians and scientists dedicating their careers to babies like mine. It would be incredible to build an equally transformative learning experience for patient-families, where we can connect and collaborate with other families to advance the research, education, and advocacy this community urgently needs.”
Stephanie Ruidiaz, Mom of Luna, who tragically passed away from NEC; NEC Society Board Member
Advocating for babies and families
The NEC Society is actively engaged in advocacy efforts to protect the health of NICU babies and families, improve equitable access to healthcare and pasteurized donor human milk, and advance science and research funding.
Protecting preemies with March of Dimes
At the March of Dimes Advocacy Summit, we met with elected officials to advocate for the PREEMIE Act, which represents the federal government’s commitment to preventing prematurity, and called for the urgently needed protection of Medicaid.
On The Hill with NICU Parent Network
We teamed up with NICU advocates from across the US, and met with congressional offices to advocate for H.R. 236, the NICU Babies’ Bill of Rights, which raises awareness for patient-family integration and shared decision making in the NICU.
Actively engaging with the FDA
The NEC Society continues to work with the FDA to help advocate for the neonatal community, from families to clinicians and scientists, to optimize the strategies and tools available to best support the health of infants and protect them from the devastation of NEC. It is essential for families and clinicians to work together to navigate the risks and protective factors associated with NEC in the NICU.
Running to advocate for a world without NEC
As a charity partner with the California International Marathon (CIM), our team of 18 runners woke up before sunrise, put on their NEC Society jersey, and ran 26.2 miles for a world without NEC!
“I’m running for the NEC Society because I want to be part of the solution that is fighting for better early detection and more research.”
Ethan Kissock, NEC Society CIM Charity Runner
The most impactful NEC Awareness Month ever
The NEC Society relies on an international network of individuals to support and advance our mission of building a world without NEC. Here are just a few powerful highlights from 2025!
New Jersey NEC Awareness Resolution
Katie and Aslan worked with elected officials to pass New Jersey’s NEC Awareness Resolution in honor of their son, John, who tragically passed away from NEC.
South Carolina NEC Awareness Resolution
Sara and Joe worked with elected officials to pass South Carolina’s NEC Awareness Resolution in honor of their son, Zack, who was diagnosed with NEC and now has long-term complications.
A Toast to Tiny Tummies
Tyler and Janelle hosted their first annual event, to honor their son, Cole, who developed NEC while he was in the NICU. They invited their friends out for a night of food, drinks, and games, all to raise funds and awareness to advance our mission.
YOLO 2K, 5K, 10K
We partnered with UC Davis Children’s Hospital to host our first annual YOLO Run for a world without NEC.
On May 17, NEC Awareness Day, 300 runners gathered in Davis, CA, and virtually, to run in honor of babies and families.
Download the 2025 Impact Report
Access an overview of the NEC Society’s leadership team, a 2025 financial health analysis, and donor spotlights by downloading our full impact report for 2025!
Join the NEC Society in 2026!
The NEC Society’s progress is only possible because of our community, and there is still so much work to do. Babies and families are being devastated by this cruel disease every day.
We need you to join us in 2026 to advance research, education, and advocacy for a world without necrotizing enterocolitis.
Previous Reports
For detailed financial information, you can access our 990 Forms from 2019 through 2023.
Questions or need more information? Please reach out to Sarah Piephoff, at sarah@necsociety.org