NEC Society

Did you know we have a NEC Society shop? https://necsociety.org/shop/ From apparel and our famous Tree of Courage to mugs and free downloadable graphics, there is something for the whole family! Not only are these items wonderful ways to honor a loved one or raise awareness--all proceeds support our mission to build #AWorldWithoutNEC. Already have some NEC Society merchandise? Feel free to share a photo below! #PreventNEC #AWorldWithoutNEC #RareAsOne... VISIT THE SHOP HERE: https://necsociety.org/shop/

Please join our international community as we send a wave of light across the globe. On #NECDay and every day, we honor the memories of all of the precious babies who tragically passed away from necrotizing enterocolitis. It is because of them that we are reminded of the urgency and import of our work. With everything we do at the NEC Society, we carry these children in our hearts. Let’s light a candle and say their names

"When Micah died just before his first birthday, Jennifer discovered that not a single NEC charity existed. She felt compelled to leverage her background in community organizing and established the NEC Society." https://chanzuckerberg.com/rao/nec-society/ #RareAsOne #PreventNEC #AWorldWithoutNEC

One of the most impactful ways to raise awareness is through storytelling. What is your NEC story? Who have you shared it with today? #NECday #preventNEC #aworldwithoutnec #RareAsOne

Necrotizing enterocolitis (NEC) is a devastating intestinal disease that primarily affects babies born prematurely or with a medical condition. NEC is often a life-altering diagnosis and infants who survive the disease often have life-long complications. Unfortunately, the field's understanding, research, and resources are inadequate for NEC survivors and their families. Much more is needed to understand how NEC affects children, families, and young adult NEC survivors, years after their original NEC diagnosis. As the NEC Society works to build a world without this devastating disease, we are committed to advancing the needs of NEC survivors and their families. https://m.youtube.com/watch?v=Ji2rB-JVniI&t=581s #PreventNEC #RareAsOne #AWorldWithoutNEC

The NEC Society features blogs from families who have been personally affected by NEC, clinicians who care for these fragile infants, and scientists who are working to help us build a world without this devastating disease. You can stay current with the NEC Society by subscribing to our blog: https://necsociety.org/category/raising-awareness/ #PreventNEC #RareAsOne #AWorldWithoutNEC

On NEC Awareness Day, despite being geographically apart, we are coming together as ambassadors to spread the word about necrotizing enterocolitis. What do you want the world to know about NEC?

Exciting new research published by the NEC Society's Scientific Advisor Dr. Misty Good and team at Washington University! "The study demonstrates that the neonatal period is associated with a reduced ability to produce IL-22 in the intestine, which could render the premature infant susceptible to the extensive epithelial cell damage seen during NEC. It seems intuitive that the administration of IL-22 to infants displaying NEC symptoms may prevent intestinal injury through t...he enhancement of epithelial cell regeneration. Therefore, the exploration of the protective role of IL-22 in clinical settings may set the ground for a new therapeutic strategy to #preventNEC." https://www.cell.com/cell-reports-//S2666-3791(21)00163-4

NEC is a devastating disease that most people don’t know about until it affects them. https://necsociety.org/2016/10/05/lukes-story #PreventNEC #RareAsOne #AWorldWithoutNEC

We would like to extend an enormous thank you to everyone who has helped us celebrate #NECDay by starting a Facebook fundraiser! When you raise money for the NEC Society, you are helping us advance research, advocacy, awareness, and education. Best of all, you are bringing us closer to #AWorldWithoutNEC. You, our community, are the reason we are able to do what we do. Thank you. You can start your own Facebook fundraiser HERE: https://www.facebook.com/necsociety/fundraisers/ ...Or you can donate via Kindful: https://necsociety.kindful.com/

We are thrilled to welcome OU Health to the #NEC Biorespository! "As part of the NEC Society Biorepository, the NICU at Oklahoma Children’s Hospital will collect a variety of samples, including urine, blood and stools, from preterm infants shortly after birth, with their parents’ consent. The collection is non-invasive and uses samples that will be analyzed for other reasons and that would otherwise be discarded after analysis. If any of those babies develop NEC, samples wil...l be collected from the intestines (if removed) in collaboration with Oklahoma Children’s Hospital pediatric surgeon and NEC expert Catherine Hunter, M.D. All samples are de-identified and can be used for research at individual institutions in the NEC Biorepository, as well as for multicenter projects with numerous collaborating researchers." https://www.ouhealth.com//nicu-at-oklahoma-children-s-hos/

We are so thankful to see the NICHD - Eunice Kennedy Shriver National Institute of Child Health and Human Development recognizing #NECday and helping us build a world without #NEC! The Director of the NICHD, Dr. Diana Bianchi, will join us for #NEC2021 on Wednesday, May 19 for her presentation on "NEC and the 4 Ns: Nutrition, NIH, NICHD, and Neonatal Research." There's still time to register! https://necsociety.org/NEC2021/... #preventNEC See more

Zachary was hospitalized for 91 days. Micah developed necrotizing enterocolitis (NEC), a life-threatening intestinal disease, and remained hospitalized for 299 days. By the time both of my twins were at home, I knew things that I only wish I had known from day one in the NICU. https://necsociety.org//10-things-all-parents-of-preemies/ #PreventNEC #RareAsOne #AWorldWithoutNEC

We are delighted to announce our 2021 Summer Webinars! Our upcoming session, Elevating Nurses in a Team-Based Approach Toward NEC Prevention, will be held June 22, 2021 @ 12:00 PM PT. REGISTER: https://us02web.zoom.us//register/WN_CrFJ4ySUTr-WEJ_YLlj5rA... ...And mark your calendars for the rest of our webinar lineup: Donor Milk Advocacy, July 9 https://us02web.zoom.us//register/WN_KgNO1gX9QMyjgMWl3xgnPQ Advancing Equity, August 20 https://us02web.zoom.us//register/WN_yhtTn0ULRoSxoyHgmOowkg #PreventNEC #RareAsOne #AWorldWithoutNEC

Breast milk has been scientifically proven to help prevent NEC compared to infants who are fed formula. Yet, sometimes infants who are fed breast milk still get NEC, which can leave us confused and asking Does breast milk actually prevent NEC? How? And, why doesn’t it always prevent NEC? https://necsociety.org//i-gave-my-baby-breast-milk-why-di/

It was an honor to welcome Professor Neena Modi as the #NEC2021 keynote speaker! Check out the recording to watch her reveal the dramatic variation in feeding practices and the need to advance research so we can optimize nutrition & #preventNEC: https://www.youtube.com/watch?v=x0ZTTnMAlLs... #RareAsOne

The NEC Society is grateful to the generous community of families, organizations, foundations, and corporations that make our work possible. We rely on charitable donations of all sizes to advance our vision of a world without necrotizing enterocolitis. Check out these stories to learn why families just like yours are investing in the NEC Society: https://necsociety.org/featured-donors/

Necrotizing enterocolitis (NEC) is an intestinal disease that primarily affects premature and medically fragile infants. NEC causes an inflammatory process that can lead to intestinal tissue damage and death. Despite significant advances in neonatal care, the morbidity and mortality rates associated with this disease have not significantly improved in decades. In the U.S. alone, thousands of babies develop NEC each year and hundreds of babies die from this complex intestinal ...condition. Once diagnosed, many babies only live for a few hours or days, and survivors can have lifelong neurological and nutritional complications. https://necsociety.org/nec-now/ #PreventNEC #RareAsOne #AWorldWithoutNEC

While the Tree of Courage was inspired by Micah’s smile, our family’s love, and his care team’s dedication, the painting is for every family and provider who have persevered through unfathomable heartache and created something beautiful in its aftermath. ~ Leslie Napolitano, artist of the Tree of Courage, whose grandson died from NEC https://necsociety.org//the-story-behind-the-tree-of-cour/

For premature and medically fragile babies, breast milk can be a lifesaving intervention. The NEC Society’s webinar series on human milk covered evidence-based practices for optimizing the use of human milk with babies at increased risk of NEC, as well as practical strategies for partnering with NICU parents. Learn more HERE: https://necsociety.org//fall-webinar-series-on-human-milk/... #PreventNEC #RareAsOne #AWorldWithoutNEC #webinar #humanmilk #NICU #nutrition

"Necrotizing enterocolitis is not just a major disease that affects premature infants. Rather, it is the very definition of a phantom menace. Creeping up silently and without warning, NEC strikes fiercely and without restraint, and is feared by neonatal caregivers of all stripes. From the point of view of the family, however, NEC is like a phantom menace on steroids. You see, unlike other conditions that affect premature infants, such as heart disease, lung disease, or kidney... disease, NEC appears out of nowhere, representing a mysterious threat to their previously healthy infant’s life a threat they have often never heard of before. It is a sad and frightening truth that in many cases, the very first time that families will have heard of NEC this awful menace putting their child’s health in mortal danger is when their precious baby has begun to fight it." ~ David J. Hackam, MD, PhD, Chief of Pediatric Surgery and Surgeon-in- Chief Johns Hopkins Children’s Center Read the rest of the article HERE: https://necsociety.org//fighting-the-phantom-menace-of-ne/ #PreventNEC #RareAsOne #AWorldWithoutNEC

In the NICU, parents are not visitors: They are essential members of the care team. Parents know their babies better than anyone else and are often the first to recognize when something is wrong. It is intuitive to understand that babies need their parents, yet this is also borne out in research. For vulnerable newborns, their mother’s milk is a lifesaving intervention. Infant skin-to-skin care with parents promotes growth and healthy development." ~Jennifer Canvasser, Kurlen Payton, and Elizabeth Rodgers #PreventNEC #RareAsOne #AWorldWithoutNEC #NICU #COVID19 #coronavirus #pandemic https://www.statnews.com//nicu-both-parents-essential-chi/

"My twins, Micah and Zachary, were born three months prematurely. They spent 91 terrifying days in the NICU, where they each nearly lost their lives. During this time, I did not reach out to my family and friends because I was too overwhelmed. I needed people to reach out to me and insist on providing their love and support. Fortunately, people did, and here are the amazing gifts they gave Do you know a NICU family? Which gift can you share?" Read the rest of the article HER...E: https://necsociety.org//10-incredible-gifts-for-nicu-fami/ #PreventNEC #NICU #prematurebaby #RareAsOne #aworldwithoutnec

"In 2020, I grew into not only a mother, but a stronger person, as well. I was able to stand up and keep going in the middle of a trauma. I became an advocate for not only my own babies, but other premature babies and grieving mamas. I became part of the NICU community and everything that comes with it." #preemie #preemiestrong #NICU #2020 https://grahamsfoundation.org/reflecting-on-2020-growing-a/

"When Clifford was born by emergency cesarean section, he needed immediate resuscitation, intubation, and surgical procedures. We began a very long Neonatal Intensive Care Unit (NICU) journey. He had a lot of surgeries, several life-threatening infections, countless blood transfusions, constant ventilation, and months with no food. For the first few months of his life, we were uncertain if we would ever take him home. Because his condition was so rare, there was no clear cour...se for how to treat him. The neonatologists and pediatric surgeons at C.S. Mott Children’s Hospital began their research even before he was born. And while Clifford fought for his life in the NICU, his medical team kept brainstorming and trying different ways to help him." Read the rest of Clifford's story here: https://necsociety.org/2014/10/08/cliffords-story/ #PreventNEC #RareAsOne #PreventNEC