About

THE ORGANIZATION

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.

OVERALL CAPACITY

The Morgan Leary Vaughan Fund has developed capacities to address issues related to NEC from a personal perspective while interacting with all levels of experts and influencers; and informing on policy. In this type of venture, continuously developing and nurturing relationships with all types and layers of stakeholders—from parents and patient advocates to neonatologists and clinicians, from researchers to media and policy makers—is key. The wide variety of connections through our Board of Directors’ and our Scientific Advisory Board members’ direct affiliations and networks, both nationally and internationally, help garner and circulate knowledge and information.

Our founders’ unique expertise comes from personal experience which helps deepen our organizational knowledge. Also, we have implemented various pilot projects in education and outreach, and are venturing into collaborative involvement in larger and more significant research advocacy projects.

BACKGROUND

NEC is a rare, inflammatory 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 is the 8th leading cause of death during the newborn period (the first 28 days of life)
  • NEC affects about 9,000 of the 480,000 infants born preterm each year in the United States
  • 90% of NEC related deaths in the United States occur during the newborn period
  • In 2014, 380 American infants died from NEC; 341 of them died during the newborn period
  • Infants with the most serious form have a 1 in 4 chance of dying
  • 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, CDC/NCHS, and NICHD.)

ADVOCACY WORK IN NEC SO FAR

February 14, 2012: The Morgan Leary Vaughan Fund was incorporated in Connecticut.

June 26, 2014: We were awarded tax exempt status under Section 501(c)(3) of the United States Internal Revenue Code and became the first public charity dedicated to NEC in the United States if not the world.

February 28, 2015: We launched a disease-specific podcast series entitled Speaking of NEC: Necrotizing Enterocolitis as an educational resource for clinicians and parents of very low birthweight babies, those who have the greatest risk for developing NEC.

April 2015: We became the first patient organization to advocate for NEC as a rare disease when we joined National Organization for Rare Disorders (NORD) and gained NEC official recognition as a rare disease and a listing in their Rare Disease Database.

May 2015: We joined the Preemie Parent Alliance (PPA), an international network of organizations offering support to families of premature infants.

November 2016: We published a printed companion brochure to our Speaking of NEC podcast series. Distribution specifically targeted NICU medical directors at the 97 United States Neonatal- Perinatal Training Program Centers as identified by the American Academy of Pediatrics.

January 9, 2017: We launched the Natural History Registry for Necrotizing Enterocolitis (NEC Registry), a collaborative effort between The Morgan Leary Vaughan Fund and NORD to study NEC. Morgan’s Fund was selected by NORD to create the NEC Registry as part of a cooperative project between NORD and the U.S. Food and Drug Administration that supports research on rare diseases and how they progress over time—natural history studies.

Locally, we have participated in:

  • Connecticut Children’s Medical Center/UConn Health Center’s Neonatal-Perinatal Research Day, Necrotizing Enterocolitis: New Insights into Prevention, March 2014
  • Connecticut Children’s Medical Center’s Building Brighter Futures: Advances in Pediatric and Neonatal Care, May 2015
  • Heart of the City’s Fireworks!: Stories of triumph + celebration, July 2015
  • Connecticut Children’s Medical Center/UConn Health Center’s Pediatric Translational Research Seminar Series, “Omics” Meets the Fetus and Newborn, December 2015
  • NORD’s Connecticut Rare Disease Day State House Event, February 2016
  • NORD’s New York Rare Disease Day State House Event, February 2016
  • Connecticut Children’s Medical Center/UConn Health Center’s Pediatric Translational Research Seminar Series, Influence of Gut Bacteria and Human Milk on Neonatal NEC, February 2017
  •  NORD’s Connecticut Rare Disease Day State House Event, February 2017
  • Rare Action Network Workshop and Meeting, March 2017
  • New England Association of Neonatal Nurses’ Annual Conference, March 2017

Nationally, we have participated in:

  • PPA’s Preemie Parent Summit, September 2014
  • NORD’s Rare Diseases and Orphan Products Breakthrough Summit, October 2014
  • NORD’s Rare Diseases and Orphan Products Breakthrough Summit, October 2015
  • NORD/University of Maryland School of Pharmacy’s Patient-Centered Outcomes Research (PCOR) Training, October 2015
  • National Coalition for Infant Health/Institute for Patient Access’ Infant Health Policy Summit, September 2016
  • PPA’s Preemie Parent Summit, November 2016
  • NEC Society/UC Davis’ Necrotizing Enterocolitis Symposium: A Transdisciplinary Approach to Improved NEC Outcomes, April 2017

Internationally, we have participated in:

  • Special Interest Group NEC, U.K.’s 4th International Conference held in London, England, September 2016
  • International Neonatal Consortium’s NEC Workgroup held in Davis, California, April 2017