Sacramento, California – The Necrotizing Enterocolitis (NEC) Society is grateful to announce that California has declared May 17th as NEC Awareness Day with ACR 69. This resolution reflects the tireless dedication and advocacy by the NEC Society, its founder, Jennifer Canvasser (Davis, CA), and Assemblymember Cecilia Aguiar-Curry, who represents the 4th California Assembly District.
Necrotizing enterocolitis (NEC) is a devastating intestinal disease that affects medically fragile infants in their first weeks and months of life. The NEC Society is a 501(c)(3) nonprofit organization dedicated to building a world without this disease by advancing NEC research, education, and advocacy. The NEC Society is a patient-led organization that collaborates with expert clinicians and researchers to better understand, prevent, and treat this devastating neonatal intestinal disease.
Jennifer Canvasser founded the NEC Society after her son Micah tragically died from complications of necrotizing enterocolitis just before his first birthday. Since then, the organization has harnessed the energy of a painful situation and transformed the heartache into a powerful movement that brings together patient-families and experts worldwide to improve outcomes for the most vulnerable infants at risk of NEC.
NEC Society’s founder and executive director, Jennifer Canvasser, shares, “I am thrilled for the state of California to join the NEC Society in recognizing the urgency of raising awareness and advancing research to help other families avoid the devastation of necrotizing enterocolitis. This resolution is an essential first step towards accelerating better prevention and treatment options for necrotizing enterocolitis.”
You can learn more about the NEC Society and join the movement working to build a world without NEC at NECsociety.org
ACR 69 Bill Text:
WHEREAS, Necrotizing enterocolitis (NEC) is the most common cause of death in hospitalized premature infants after two weeks of age; and
WHEREAS, Babies born prematurely or with a medical complication, like congenital heart disease, are most at risk of NEC; and
WHEREAS, Thousands of babies develop NEC each year and hundreds of babies die from this complex intestinal condition; and
WHEREAS, Necrotizing enterocolitis causes a severe inflammatory process that can lead to intestinal tissue damage and death and, once NEC is diagnosed, many babies only live for a few hours or days; and
WHEREAS, Surgery for NEC is not curative, and the babies who survive often have lifelong neurological and nutritional complications; and
WHEREAS, Necrotizing enterocolitis results in approximately $5,000,000,000 of hospitalization expenses per year and roughly 19 percent of neonatal healthcare expenditures in the United States, with an estimated cost of $200,000 or more for each case of surgical necrotizing enterocolitis; and
WHEREAS, Breast milk is one of the most effective ways to help prevent necrotizing enterocolitis in medically fragile infants, and when the mother’s milk is unavailable, pasteurized donor human milk is the next-safest option for babies at risk of NEC; and
WHEREAS, Formula does not protect against the risk of NEC in medically fragile infants and infants at risk of NEC receive the most protection from their mother’s own milk and pasteurized donor milk; and
WHEREAS, Although the risk of necrotizing enterocolitis cannot be fully eliminated and there are not yet sure ways to stop or cure NEC, preventative measures are effective at reducing risks; and
WHEREAS, Parents must be trusted and valued as the most important member of their baby’s care team, and healthcare providers should partner with families to provide the best care for infants at risk of NEC; and
WHEREAS, Necrotizing enterocolitis can develop in both premature babies and babies born at term and more data is desperately needed to better understand how and why NEC occurs in preterm and term infants; and
WHEREAS, Disparities and variation in care lead to Black infants being disproportionately affected by, and dying from, necrotizing enterocolitis compared to White infants; and
WHEREAS, The NEC Society is a 501(c)(3) nonprofit organization founded and led by a bereaved mother from California whose son died from complications of NEC, and the NEC Society is the world’s leading charity working to accelerate NEC research, education, and advocacy; and
WHEREAS, To build a world without necrotizing enterocolitis and improve outcomes for infants and families, we must bring Californians together to raise awareness about this devastating neonatal disease; now, therefore, be it
Resolved by the Assembly of the State of California, the Senate thereof concurring, That the Legislature recognizes the importance of raising awareness about necrotizing enterocolitis; and be it further
Resolved, That the Legislature hereby proclaims May 17, 2023, as Necrotizing Enterocolitis Awareness Day in California; and be it further
Resolved, That the Chief Clerk of the Assembly transmit copies of this resolution to the author for appropriate distribution.