NEC Society

A decade ago, we launched our movement for a world without necrotizing enterocolitis (NEC). We could not accept the isolation and lack of resources we experienced in the NICU when our baby was diagnosed with NEC. We could not accept the false notion that NEC was inevitable in some preemies - a complication of prematurity that couldn't be avoided. We could not accept that there was not a single organization in the world dedicated to understanding, preventing, and treating this cruel disease. We will never accept the inability to #preventNEC. We must #preventNEC and build a world without this devastating disease. Our babies and families are counting on us. And together, we will get there. We have come so far in 10 years. You can help us go even further over the next decade at NECsociety.org #NECresearch #NECeducation #NECadvocacy

Check out how the NEC Biorepository, led by Dr. Misty Good, is advancing research to improve our ability to understand, diagnose, prevent, and treat necrotizing enterocolitis. With support from the Chan Zuckerberg Initiative  The National Institutes of Health, and NEC Society we are bringing together the leading clinicians, scientists, and patient-family advocates to prevent this cruel disease. Please watch, share, and learn more about the science that's getting us closer to a world without NEC. #preventNEC #RareAsOne

Our team had an impactful week in Washington DC last week, working tirelessly to #preventNEC. ✅ Patient-Centered Outcomes Research Institute Annual Meeting ✅ National Organization for Rare Disorders Summit ✅ Legislative meetings ✅ Our Research Director, Erin Pryor MPH, RDN, LD, presented at the FDA, Centers for Disease Control and Prevention, Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) workshop on Live Biotherapeutic Products to Prevent Necrotizing Enterocolitis in Very Low Birth Weight Infants. And so much more - we have ignited a movement for a world without NEC and together we will get there. Join us at NECsociety.org

This month is our 10-year anniversary 💜 The NEC Society was established in 2014 after the Canvasser family lost their son, Micah, to NEC. With your support, we have transformed the NEC community from pain to power and isolation to collaboration. We are grateful to everyone who shares our vision of a world without NEC and believes in our work to #preventNEC! Join us at NECsociety.org

Great team to work with!! NEC Society 💙💚

We are so proud of our team for working tirelessly for a world without necrotizing enterocolitis (NEC). We are bringing together patient-families, clinician-researchers, and elected officials to raise the profile of this devastating neonatal disease. Thanks to our community's efforts, our families have partnered with elected officials to declare May 17 as NEC Awareness Day in California, Colorado, Georgia, Louisiana, New York, Pennsylvania, and Utah. We also want to highlight San Antonio, TX (thanks to Rexton's family!) and São Paulo, Brazil (thanks to Tom's family!) for recognizing NEC Awareness Day! In addition to our state-level efforts, Congressman Mike Thompson (CA-04) partnered with Congressman Kevin Kiley (CA-03) and introduced the NEC Awareness Day Resolution in the US House of Representatives on May 17, 2024. It's been nonstop for our NEC Society team, and we will keep moving forward, bringing us closer to a world without NEC. You can help us #preventNEC at NECsociety.org

We're so grateful to Schwan's Company for highlighting our storybook for bereaved families, #ForeverOurLittleOne! #ForeverOurLittleOne is written by our founder/executive director, Jennifer Canvasser, and illustrated by her mother, Leslie Napolitano. Leslie has worked at Schwan's for over 25 years, including the year her grandson, Micah, was in and out of the NICU and PICU. Micah tragically passed away from complications of necrotizing enterocolitis (NEC) just before his 1st birthday. #ForeverOurLittleOne is for all families searching for peace after the devastating loss of their little one. We're so grateful to Schwan's for helping us reach more families in need of comfort. #preventNEC

The Necrotizing Enterocolitis (NEC) Society is a 501(c)(3) nonpartisan organization that deliberately prioritizes equity and diversity. The NEC Society works to build an ever-more inclusive community, internal and external of our organization. We aim to ensure all individuals and groups touched by NEC see themselves reflected within the organization and feel a sense of belonging. The NEC Society works to elevate women, people of color, the LGBTQIA+ community, people with disabilities, and groups that have been historically marginalized. We recognize that simply valuing diversity and inclusion is not enough. The NEC Society is dedicated to transforming our values into action, and we are constantly working to improve. We are stronger together. Together, we are better equipped to build a more just, equitable world without this devastating disease. You can join the global NEC community that’s bringing together patient-families, clinicians, researchers, and other people who care to #preventNEC Join our movement by clicking here and following us on social media. The NEC Society urges you to speak up by contacting your legislators about issues that affect you, your family, and your community. 

Colorado has officially declared May 17 as NEC Awareness Day! We are so grateful to the family of Hannah, and our NEC Society development director, Julia Goldstein (and her daughter!), who led this effort in CO. Our deepest thanks to CO Representative Kyle Brown for believing in our vision of a world without necrotizing enterocolitis. Hannah developed NEC after she was born six weeks prematurely. She needed surgery and remained in the NICU for months, but thankfully is a thriving 6-year-old today!! The NEC Society and our patient-families are dedicated to doing everything possible to #preventNEC because we understand the urgency and cruelty of this disease. Together, we are honoring our little ones by advancing NEC research, education, and advocacy. California passed the first-ever #NECawareness Resolution in 2023, and we are thrilled to see Colorado, Georgia, Utah, New York, Louisiana, Pennsylvania, and many more states expanding this effort. This is what we need to accelerate our mission! Join us as we celebrate Colorado's Resolution, Hannah's sweet six-year-old smile, and learn more at NECsociety.org

The NEC Society works to build an ever-more inclusive community, internal and external of our organization. We aim to ensure all individuals and groups touched by NEC see themselves reflected within the organization and feel a sense of belonging. The NEC Society works to elevate women, people of color, the LGBTQIA+ community, people with disabilities, and groups that have been historically marginalized. We recognize that simply valuing diversity and inclusion is not enough. The NEC Society is dedicated to transforming our values into action, and we are constantly working to improve. We are stronger together. Together, we are better equipped to build a more just, equitable world without this devastating disease. You can join the global NEC community that’s bringing together patient-families, clinicians, researchers, and other people who care to #preventNEC at NECsociety.org https://lnkd.in/dNcMXX9