Category: NEC stories


Forever Our Little One – a storybook for bereaved families

Davis, CA – Mother-daughter duo Jennifer Canvasser and Leslie Napolitano have published Forever Our Little One, a storybook for bereaved families. Jennifer is the executive director of the Necrotizing Enterocolitis (NEC) Society, which she founded after her son Micah tragically…

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Grandparents holding Grandbabies in their hearts

Written by Judith Mehl – first-time granny to Gali Ari Rotem September 10 is Grandparents Day, and as a first-time granny I should be elated. But instead, my family is in deep sorrow… My husband, Ken, and I were awoken…

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May is NEC Awareness Month

World NEC Awareness Day is May 17.  Necrotizing enterocolitis is a devastating intestinal disease that affects vulnerable infants during their first weeks and months of life. Up to 50% of the babies who get NEC will die, and survivors often…

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CEO of the American Academy of Pediatrics to Keynote NEC Symposium

The NEC Society is honored to announce that Mark Del Monte, JD will provide the keynote presentation on advocacy at the NEC Symposium taking place in San Diego, CA, August 28 – 30, 2023. Mark is the CEO/Executive Vice President…

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Research That Matters to Patients

By Linseigh Green, NEC Society Outreach Manager After graduating from NYU, the NEC Society invited me to share my story of growing up as a NEC survivor. At the 2019 NEC Symposium, I told the ballroom full of clinicians about…

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When the NICU nurse’s baby develops NEC

Written by Ryland’s mother, Margaret Fontanilla When I started working in the NICU as a new graduate nurse, I felt like a baby myself at 21 years old. More than a decade later, I gave birth to Ryland at 25…

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NEC Society & partners receive $1M award

NEC Society Research Partners Awarded $1 Million by Chan Zuckerberg Initiative Davis, CA – The NEC Society, working in partnership with two UNC-Chapel Hill researchers, will lead a $1 million CZI project titled “Integrating Patients to Accelerate the Science Towards…

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Honouring Baby Ezra

Written by Ezra’s parents, Harpreet & Tariq On July 13, 2021, I discovered the most amazing news of my life: I was pregnant with baby Ezra! This was my first pregnancy, and it caught us by surprise! Nevertheless, I was…

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Sharing Nora’s Story to Raise Awareness About NEC

Written by Nora’s parents, Johnny and Cassey We sat down to start writing Nora’s story on the nine-month anniversary of her passing. It felt fitting to spend our 4th of July sharing our girls’ story in her honor.  Nora wasn’t…

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Researchers Demonstrate Machine Learning Approach to NEC Prediction

A recent publication in BMC Bioinformatics describes a machine learning system that could potentially be used to predict NEC before the disease advances. The technology, developed by researchers at the University of Pittsburgh and Columbia University, uses a neural network…

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