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For those who may be unfamiliar, what is necrotizing enterocolitis (NEC) and why is it so devastating?
The NEC Society was founded from personal experience. Can you share what led you to create the organization?
How does the NEC Society support clinicians and scientists?
Why is collaboration between families and clinicians so central to your work?
What role does education and awareness play in preventing NEC?
What are some of the NEC Society’s most impactful or recent initiatives?
What gives you the most hope right now in the fight against NEC?
For those who may be unfamiliar, what is necrotizing enterocolitis (NEC) and why is it so devastating?
Jennifer Canvasser: Necrotizing enterocolitis, or NEC, is a life‑threatening intestinal disease that primarily affects premature and medically fragile infants. It progresses rapidly, causing severe inflammation and death of intestinal tissue, which can lead to sepsis, multi‑organ failure, and death—sometimes within hours of diagnosis. In the U.S. alone, more than 3,500 infants develop NEC each year, and mortality in the most severe cases can reach 50–100%. Despite being one of the leading causes of death in NICUs, there is currently no cure and no way to fully eliminate the risk of NEC.
For families, the diagnosis is sudden and traumatic, often following weeks of hopeful progress in the NICU. For clinicians, NEC remains one of the most feared and unpredictable diagnoses. The emotional toll on everyone involved—families and care teams alike—is profound.
The NEC Society was founded from personal experience. Can you share what led you to create the organization?
Jennifer Canvasser: I founded NEC Society after my son, Micah, developed NEC and passed away from complications from the disease just before his first birthday. After losing Micah I had to learn how to breathe, eat, and sleep again. It was, and still is, completely devastating. I found myself searching for answers, and a community that simply did not exist.
As I looked for information and resources, I realized there was no organization in the world dedicated to NEC—no central place focused on preventing the disease or bringing together the community affected by it. Despite how severe and life‑threatening NEC is, there was a clear gap in awareness, coordination, and advocacy. Families like mine were navigating this experience alone, without a dedicated community or voice.
Recognizing that gap led me to found the NEC Society in 2014. I created the organization to bring together families, clinicians, and researchers from around the world for a shared purpose: to build a world without NEC. From the beginning, our work has focused on research, education, and advocacy—so all infants are protected against this cruel disease.
Collaboration between families, clinicians and scientists is essential, because progress requires both lived experience and medical expertise. Everything we do is guided by our mission to build a world without necrotizing enterocolitis and to improve outcomes for infants and families affected by this devastating disease.
My hope in founding the NEC Society was to transform profound personal loss into meaningful action—to ensure NEC is recognized, addressed, and ultimately prevented, so that every infant is protected from this cruel disease. The NEC Society exists to push the boundaries of what is possible for infants and families—advancing understanding, improving outcomes, and driving meaningful change.
How does the NEC Society support clinicians and scientists?
Jennifer Canvasser: Supporting clinicians and scientists is central to our work, because preventing NEC and improving outcomes requires close collaboration among families, care teams, and researchers. The NEC Society works alongside healthcare professionals to advance evidence‑based care, accelerate learning, and create opportunities for collaboration across disciplines and institutions.
One of our cornerstone initiatives is the NEC Symposium—the world’s largest conference dedicated exclusively to necrotizing enterocolitis. The Symposium convenes multidisciplinary physicians, bedside clinicians, surgeons, researchers, and patient‑families to share emerging science, best practices, and real‑world experience. These connections accelerate the translation of research into practice and help ensure care decisions reflect both evidence and lived experience.
We also support clinicians through our research awards and the NEC Biorepository, which connects multiple research centers to share rare and difficult‑to‑obtain tissue samples. By breaking down silos and fostering collaboration, we help clinicians and scientists move toward discoveries that can improve bedside care.
Education is another key pillar of our work. We provide clinical resources, host educational sessions, and partner with professional organizations to promote evidence‑based prevention strategies and post‑diagnosis care. Throughout these efforts, families remain central, because understanding the family experience strengthens communication, trust, and care delivery.
Ultimately, our role is to partner with clinicians—not just support them. NEC is one of the most complex and devastating diagnoses in the NICU, and no single discipline can address it alone. Building a connected, collaborative community is essential to moving the field forward.
Why is collaboration between families and clinicians so central to your work?
Jennifer Canvasser: Collaboration between families and clinicians is central to our work because NEC profoundly impacts everyone involved in a baby’s care. Families bring lived experience, urgency, and insight that cannot be captured through data alone, while clinicians bring expertise and a commitment to evidence‑based care. Together, these perspectives lead to stronger, more meaningful solutions.
At the NEC Society, we intentionally create spaces—through research, education, and convenings like the NEC Symposium—where families and clinicians can learn from one another as partners. New in 2026, we are launching the world’s first NEC Family Summit—an inaugural conference in September designed to bring together families affected by NEC and transform shared trauma into collective purpose that fuels our mission. This collaboration strengthens communication, builds trust, and ensures that care practices and research priorities reflect what truly matters at the bedside.
Ultimately, preventing NEC and improving outcomes requires partnership. When families and clinicians work together, we move closer to meaningful progress—and to a future where no family has to experience the devastation of NEC.
What role does education and awareness play in preventing NEC?
Jennifer Canvasser: When my son Micah was diagnosed with NEC, there was little awareness of the disease, and my family felt isolated and alone. That experience underscored the critical role education plays in improving outcomes. NEC is often misunderstood and can be extremely difficult to recognize early. NEC’s complexity means we still need more science to better understand the earliest signs and guide evidence‑based strategies to reduce its impact.
Given the gaps in science, clinicians, families, and institutions are still working to adequately understand the risks, early signs, and evidence‑based prevention strategies, to better protect infants.
We work tirelessly to elevate understanding of NEC and highlight its impact on babies, families and clinicians. Efforts such as NEC Awareness Month in May and NEC Awareness Day on May 17 create space for education, dialogue, and shared learning, while helping ensure NEC remains a visible and urgent issue in neonatal care.
Awareness also gives families a voice. By centering family experiences alongside clinical and scientific knowledge, education becomes more meaningful and actionable. Increasing understanding across families, clinicians, and researchers helps create a more informed community—one better equipped to prevent NEC and improve care for those affected by this devastating disease.
What are some of the NEC Society’s most impactful or recent initiatives?
Jennifer Canvasser: Some of our most impactful recent work focuses on advancing research, strengthening collaboration, and improving the experience of families navigating NEC. One major area of growth has been the expansion of the NEC Biorepository, led by the NEC Society’s Scientific Advisor, Dr. Misty Good. The Biorepository addresses one of the most significant barriers in NEC research: the limited availability of high‑quality, well‑characterized tissue samples needed to advance scientific discovery.
We are also helping advance single‑cell intestinal research, which has the potential to deepen scientific understanding of NEC at a foundational level and inform future prevention and treatment strategies.
At the same time, we are expanding post‑diagnosis care initiatives for families. NEC is a devastating, life-altering diagnosis. Families need ongoing support, resources, and connection. This work focuses on ensuring families are not navigating the aftermath of NEC alone.
We continue to grow our global reach through the NEC Symposium and international partnerships, bringing clinicians, researchers, and families together to foster collaboration and shared learning worldwide.
What gives you the most hope right now in the fight against NEC?
Jennifer Canvasser: What gives me the greatest hope is the momentum we are building. Clinicians, researchers, industry partners, and families from around the world are coming together with a shared commitment to protect infants and improve outcomes—and that collective effort is already moving the field forward.
That momentum grows when healthcare professionals and organizations engage through research, the NEC Symposium, family‑centered care, and partnerships in education and advocacy. Each collaboration strengthens our ability to learn faster, work smarter, and create meaningful change for infants and families affected by NEC.
The NEC Society is uniquely positioned to meet this moment. The urgency of this work is undeniable, and we cannot afford to move slowly. What inspires me most is seeing people step beyond traditional silos—offering their time, expertise, and lived experience in service of something bigger than any one institution or discipline. We are building a global community of experts and families working together united by a shared responsibility to give infants and families the care, knowledge, and hope they deserve.
