Necrotizing enterocolitis affects roughly 10% of the 450,000 premature infants born in the US annually. Treatment advances for NEC have not progressed significantly in the last 30 years, and many clinicians and scientists continue to work diligently to find ways to decrease the morbidity and mortality of NEC.
Over the years, many other prominent disease etiologies have initiated advocacy organizations that are designed to unite patients/families with the disease, bring attention to the unique problems that face those affected by the disease, and fund research that is designed to find a cure or limit negative sequelae. Prior to the era of the internet, only those diseases with the largest number of affected people could afford advocacy groups, because it was just too expensive to print flyers and pamphlets or to design radio and television ads.
Unfortunately, during this time, many of the more “orphan diseases” did not have advocacy or support groups because they could not afford the publicity that was required to unite individuals with the disease. Where did these families turn? Who could help them to get the word out?
Once the internet and social media became mainstream, many smaller advocacy groups began to emerge and were able to get their message out to the rest of the word. Suddenly, avenues like Facebook, Google, and Twitter were able to unite like-minded individuals from these smaller groups.
Such is the story of the NEC Society, a non-profit organization that was launched in 2014 by a mother who lost her 11-month old son to complications of necrotizing enterocolitis. The organization started small but with the help of a few national figureheads and countless hours of work by the directors, it began to reach parents of affected infants and clinicians around the globe.
The organization currently maintains a 12 member Scientific Advisory Council composed of clinicians and nurses, as well as a robust Research Collaborative that involves nearly 50 basic and clinical scientists across the country. But the unique attribute of the NEC Society is not its scientific presence, but its ability to bring both the family perspective and an evidence based clinical approach together under one roof. The organization has more than 600 families under its umbrella, each with a personal story to share.
In 2017, with the help of a PCORI engagement award, the NEC Society hosted the nation’s first NEC Symposium at the University of California, Davis. This meeting brought NEC stakeholders and families together for a three day event full of science, advocacy, and family support.
Over the last year, the organization has been very successful in maintaining positive momentum. It had its meeting manuscripts published in the Seminars of Pediatric Surgery, worked with national and international parties to establish May 17th as World NEC Awareness Day, and established the nation’s first tissue biorepository for NEC specimens.
This year, with continued support from PCORI and the National Institute of Child Health and Human Development (NICHD), the organization will host the second NEC Symposium at the University of Michigan from June 2-5, 2019. During this time, participants will discuss the latest scientific breakthroughs and planned drug trials for the treatment of NEC, as well as ways to continue to prevent the onset of this disease. Most importantly, families and former patients will be onsite to share their stories and inspire us to do everything we can to improve outcomes.
As an academic surgeon scientist, I find it very personal and meaningful to be united with families who have been affected with a disease that I am passionate about curing. Sometimes in today’s intense market of academic surgery, with all the demands to publish, write successful grants, teach, and lead divisions and departments, it is daunting to see the forest through the trees. So how do you do it? What keeps you grounded? What aspect of patient care do you use to avoid getting lost?
From my perspective, it is such a refreshing privilege to hear stories from patients and their families and to be reminded why I went into academic surgery in the first place. These stories keep me on task. I feel that we all need this from time to time. We all need to be reminded occasionally that that our tireless efforts in the laboratory, the clinic, the operating room, and the boardroom all really go to help these individuals and not ourselves. Therefore, I would encourage other academic organizations to continue to involve patients and families, because it is the families that we serve and the patients for whom we care who are the ones that will make us truly successful. Please feel free to share personal stories about your career, and how patients and their families kept you grounded in a busy academic environment.
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