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.

CONTACT US >

The Morgan Leary Vaughan Fund
203 Evening Star Drive
Naugatuck, CT 06770

203-808-0874

Mary Midolo

mm@morgansfund.org 

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BACKGROUND

Necrotizing Enterocolitis (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:

(Sources: UC Davis Health System, CDC/NCHS, and NICHD.)

 

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.

ADVOCACY WORK IN NEC SO FAR
February 14, 2012: The Morgan Leary Vaughan Fund was incorporated in Connecticut.
 

May 2014: We joined the Preemie Parent Alliance (PPA), an international network of organizations offering support to families of premature infants.

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

 

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. The brochure was recognized as part of Graphic Design USA’s 2017 American Health + Wellness Awards™.

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.

 

June 11, 2018: We launched the inaugural Speaking of NEC: Unplugged event, a one-day regional conference focused on identifying practical solutions for reducing the devastating effects of NEC on premature infants and their families at the Courtyard by Marriott in Cromwell, Connecticut. The event drew more than 100 participants from the Northeast and beyond.

Locally, we have participated in:

Nationally, we have participated in:

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