Organizing the community to advance research
Jennifer Canvasser’s son Micah developed necrotizing enterocolitis (NEC) when he was six weeks old, after being born prematurely at just 27 weeks gestation. 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.
NEC is a multifactorial intestinal disease that affects thousands of premature and medically fragile infants every year and causes one in 10 deaths in U.S. neonatal intensive care units. Approximately 20-30 percent of the babies who are diagnosed with NEC die within hours or days of their diagnosis. Too often, their parents don’t even have time to say goodbye. The babies who do survive often have lifelong nutritional and neurological complications.
Jennifer believes that advocates must harness the power of stories and the expertise of patient families to propel research and prevent devastating rare diseases like NEC. Through the Rare As One Network, the NEC Society is eager to build its patient-led research network and identify strategies to advance its vision of a world without NEC.
Research Progress & Capacity Building Updates
Joining the Rare As One Network has been transformative for the NEC Society. The NEC Society has grown significantly and now has the support of paid staff, essential infrastructure, and is building a patient-led research network. The NEC Society recently hosted an international conference bringing together 300 diverse stakeholders from around the globe. Together, these patient families, clinicians, and researchers are working to advance research, education, and advocacy. The NEC Society is working to become a financially sustainable organization with the ability to serve the community for years to come.
“Advocates must harness the power of stories and the expertise of patient families to propel research and prevent devastating rare diseases like NEC.”