The NEC Society is a young organization, without an office and with very limited resources. We are led by two bereaved mothers who’ve teamed up with the world’s leading champions for improved NEC outcomes and prevention. Since the organization’s birth in 2014, we’ve reached thousands of impacted families, clinicians and researchers, internationally.
We are humbled by the opportunity to help lead the neonatal community’s efforts to reduce the incidence of necrotizing enterocoliis.
Thanks to our incredible community and people like YOU, here’s what we accomplished in 2016, together:
NEC Symposium Planning
The Symposium will take place April 5-7, 2017 on the UC Davis campus, made possible with the support of a PCORI Engagement Award. The speakers are finalized, poster abstracts are being accepted and registration is OPEN!
- We have secured nearly 40 renowned faculty members and 20 dedicated patient-family advocates for the 2017 NEC Symposium.
- Our Symposium, which will be the nation’s first conference focused exclusively on necrotizing enterocolitis, has four core goals:
- better understand NEC
- establish best practices for the prevention & treatment of NEC
- empower families
- inspire NEC research
Conducting Research, Raising Awareness and Advocating for Families:
- We launched the world’s first necrotizing enterocolitis Research Collaborative. The Research Collaborative includes many of the largest pediatric centers in the country, with internationally renowned clinicians and researchers. This ground-breaking collaborative will work together to conduct novel scientific research on NEC.
- We co-hosted the third annual international Miracle Milk Stroll, which took place in over 100 locations and included nearly 2,000 participants! The 2016 Miracle Milk Stroll raised money, awareness and human milk donations to ensure all fragile infants receive human milk to reduce their risks of NEC.
- With our organization’s commitment to family-centered care and empowering the patient-family voice, the NEC Society has been designated as a Patient Centered Outcomes Research Institute (PCORI) Ambassador.
- Through our website and social media pages, the NEC Society featured 54 original educational articles, including many family stories, which help to humanize the impact of this devastating disease.
- Our website, www.NECsociety.org, received 18,000 visitors and 34,000 views! We now have close to 1,500 Facebook followers. By connecting with the public in this way, we raise awareness about NEC to a broader audience, inspiring more people to prioritize funding and resources for NEC prevention.
By attending conferences across the country, we share our message directly with those in the neonatal and nonprofit communities. In 2016, the NEC Society was featured at the:
- Perinatal Palliative Care Symposium
- Texas Coalition for Pediatric Palliative Care Conference
- International Neonatal Consortium Meeting at the European Medicines Agency
- Mothers Milk Bank of North Texas Annual Fundraiser
- Preemie Parent Alliance Summit
- Patient Centered Outcomes Research Institute Annual Meeting
- Our Crowdrise campaign has brought in more than $5,000 and will continue to grow until the April Symposium
- Kickee Pants, an amazing infant and toddler apparel line, donated $2,000
- MEDNAX, provider of Physician staffing, donated $5,000
- The NEC Society surpassed more than 100 individual donors
- With the support of our generous community the NEC Society raised more than $17,000 to support our mission of improved NEC outcomes.
Outreach and Awareness:
- Published the NEC Symposium promotional video and the NEC Society YouTube channel. Check it out! https://youtu.be/-FILN_Af4M0
- Participated in a podcast on babywearing in the NICU
- Completed a complete website redesign
- Recognized Prematurity Awareness Month with our annual “Preemie Courage” NICU prize pack giveaway, attracting dozens of NICU nominations from around the world.
With your continued support, the NEC Society will continue to grow and improve the lives of babies at risk of developing necrotizing enterocolitis. With the nation’s first NEC Symposium taking place in April, we hope to expand the NEC Society’s reach and impacts in 2017, but we need your help to continue growing! Here are some of the most effective ways for YOU to join the NEC Society’s efforts to protect preemies from this devastating disease:
We are incredibly grateful for your support. On behalf of the NEC Society, we wish you a happy and healthy holiday season!