NEC Society

NEC is riddled with unanswered questions. And unfortunately, not even Sherlock Holmes can solve every mystery at once. That's why, with the support of the Patient-Centered Outcomes Research Institute (PCORI) and Chan Zuckerberg Initiative (CZI), we gathered a team of NEC patients, families, and clinicians to determine the NEC mysteries that most urgently need to be solved. In the end, we built a prioritized research agenda that ensures we will channel our energy into the topics that are most meaningful to every member of the NEC community. #PreventNEC #NECAwarenessMonth #NECday #necrotizingenterocolitis #NICU #healthcare #research #patients #prioritization #mystery #RareAsOne #raredisease #PCOR

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

We are so grateful to Congressman Kiley and Congressman Thompson for recognizing the urgency of preventing necrotizing enterocolitis and teaming up with the NEC Society to introduce the May 17 NEC Awareness Day Resolution in the US House of Representatives. Please join us in thanking them and encouraging your elected officials to sign on in support of H.Res.1237 so we can #preventNEC and build a world without this devastating disease.

Georgia has officially declared May 17 as NEC Awareness Day! We are so grateful to the family of Jonas, who led this effort, along with many more families in GA affected by NEC, including Gabriela's, Taylor and Hudson's, and Harper's, and to Rep. Jay Collins and Rep. Chuck Martin for believing in our vision of a world without necrotizing enterocolitis. The NEC Society's 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 so other families can avoid this devastating disease. California passed the first-ever #NECawareness Resolution in 2023, and we are thrilled to see 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 Georgia's Resolution, and learn more at NECsociety.org