Naugatuck, CT, June 20, 2018 --(PR.com
)-- The inaugural Speaking of NEC: Unplugged event, a one-day regional conference focused on identifying practical solutions for reducing the devastating effects of Necrotizing Enterocolitis (NEC) on premature infants and their families took place on June 11, 2018 at the Courtyard by Marriott in Cromwell, Connecticut. Presented by The Morgan Leary Vaughan Fund, the event drew more than 100 participants from the Northeast and beyond.
“The attendance was fantastic and it was very responsive to the quality of the speaker agenda that The Morgan Leary Vaughan Fund assembled. The message was clear: NEC is not only a dreaded disease, but also one that continues to attract clinical and research energy and expertise to combat. What a testament to Morgan and all the other infants and families who have been caught up in the battle!” said Stephanie McGuire, an Advanced Practice Registered Nurse at Connecticut Children’s Medical Center’s Newborn Intensive Care Unit. “Thank you for providing a very unique educational program for professionals and families alike.”
McGuire was commenting on her experience at the conference, which brought together relevant NEC experts and influencers, including parents, to engage and learn from each other’s experiences across the full continuum of NEC, its impact on patients and their parents, the cost to the hospitals that treat it, and the methods to improve both its short and long-term outcomes.
“Sharing our son Morgan’s experience, our family’s experience, has been an integral part of our education, outreach, and research advocacy in NEC,” said Stephanie M. Vaughan, Co-founder and President, Morgan’s Fund. “Providing a platform for other parents to share their babies’ and their experiences at a live event, regardless of outcome, was a natural extension those efforts. And the response has been tremendously positive.”
The event hosted more than 20 distinguished speakers including neonatologists, clinicians, and researchers from Connecticut Children’s Medical Center, Maria Fareri Children’s Hospital, member of the Westchester Medical Center Health Network, New York Medical College, The Children’s Hospital of Philadelphia, University of Connecticut School of Medicine, University of Pennsylvania School of Nursing, and Yale School of Medicine; executives and patient advocates from Caring Essentials Collaborative, LLC, National Organization for Rare Disorders, NICU Helping Hands, Once Upon a Preemie, Short Bowel Syndrome Foundation for Children of New England, Team Grayson, The New York Milk Bank, The Tiny Miracles Foundation, and The Wonder Twins Fund; and parents from the Northeast and beyond.
For a complete list of sessions and speakers, visit speakingofnec.org.
The Morgan Leary Vaughan Fund appreciates the support of Prolacta Bioscience, the Petit Family Foundation, Speaking for Moms and Babies, Team Grayson, and ThriveRX for this important event.
About The Morgan Leary Vaughan Fund
The Morgan Leary Vaughan Fund (Morgan’s Fund) emerged from a need to establish a mechanism for:
· Disseminating credible and timely information about Necrotizing Enterocolitis (NEC) to parents whose infants are most at risk for developing NEC
· Raising the level of public awareness about NEC and the potentially devastating effects it can have on infants and their families
· Advancing research to prevent, diagnose, treat, and ultimately, cure NEC.
Currently, it is headquartered in Naugatuck, Connecticut with a satellite office in Austin, Texas.
NEC is a rare disease that leads to necrosis (death) of the intestine. It is predominately due to prematurity and its statistics are startling:
· NEC is the second leading cause of death in premature infants
· NEC affects about 9,000 of the 480,000 infants born preterm each year in the United States
· For very low birth weight babies, who weigh less than 3 lbs, the chance of developing NEC is approximately 1 in 14
· All newborn infants born preterm or born with a low birth weight (less than 5.5 pounds) are at increased risk for NEC. The smaller the infant or the more premature the delivery, the greater the risk.
(Sources: UC Davis Health System and NICHD.)