Organizing the community to advance research
Jennifer Canvasser’s son Micah developed necrotizing enterocolitis (NEC) when he was 6 weeks old, after being born at 27 weeks. 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 if rare disease patients and advocates want to see progress within their lifetime, then we must use stories and the expertise of patients to advance research. 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.
“If rare disease patients and advocates want to see progress within their lifetime, then we must use stories and the expertise of patients to advance research.”