image: NEC Society 10 Years of Impact
Credit: NEC Society
Davis, CA — The NEC Society, a nonprofit organization dedicated to preventing necrotizing enterocolitis (NEC), a devastating neonatal intestinal disease, proudly marks its 10th anniversary. Founded by Jennifer Canvasser after the tragic loss of her son, Micah, the organization works tirelessly to build a world without NEC, the disease that killed her child and claims another child every day in the United States.
Canvasser shares, "Ten years ago, patient-families affected by NEC were isolated, and clinician-scientists worked in silos. Over the past decade, we've built an empowered community dedicated to transforming our pain into power and isolation into collaboration.”
Since 2014, the NEC Society has ignited a global movement by uniting patient-families, clinicians, scientists, and others who care. Together, the NEC Society’s diverse community is accelerating research, education, and advocacy by keeping babies and families centered in every initiative. This approach has propelled efforts to improve the understanding, prevention, diagnosis, and treatment of NEC.
Through collective action and with the dedication and support of many partners, the NEC Society is proud to celebrate 10 key achievements over 10 years:
- Access to Human Milk: advocacy efforts and collaborations have helped to increase access to human milk for infants at risk of NEC
- Patient-Family Resources: designed by families affected by NEC for families affected by NEC, and reviewed by experts in the field, the NEC Society provides resources to families
- Storybook for Bereaved Families: Forever Our Little One, a children’s book written by Jennifer Canvasser, offers bereaved families a path toward finding peace
- Funding for NEC Research: more than $100,000 to support NEC science
- NEC Awareness Day: globally, May is now recognized as NEC Awareness Month, and May 17 is NEC Awareness Day, with many declaring Resolutions
- NEC Biorepository: transforming the community’s ability to understand and prevent NEC
- NEC Publications: collectively, the NEC Society’s team has contributed to more than 500 publications
- NEC Research Incubator: a space for clinicians, scientists, and patient-family leaders to collaborate and advance NEC research
- NEC Research Priorities: developed in partnership with patient-families and clinician-scientists to focus the NEC community
- NEC Symposium: the world's largest NEC-focused conference
Canvasser continues, “Together, we are transforming what is possible for the NEC community. I am inspired by how far we have come, but as those who have witnessed the devastation of this disease understand, we still have a long way to go. We urgently need more research and improved strategies. The NEC Society will be here leading the way, keeping infants and families centered in everything we do until we achieve our vision of a world without this cruel neonatal disease.”