Press Releases

THE MORGAN LEARY VAUGHAN FUND LAUNCHES FIRST NATURAL HISTORY REGISTRY
FOR NECROTIZING ENTEROCOLITIS

NECregistry.orgResearch study is open to participants worldwide to advance understanding and treatments for rare disease that leads to
necrosis (death) of the intestine.

(NAUGATUCK, Connecticut)—January 9, 2016—The Morgan Leary Vaughan Fund (Morgan’s Fund) has launched the first natural history registry for Necrotizing Enterocolitis (NEC)—an inflammatory disease that leads to necrosis of the intestine. NEC currently has
no cure.

“The Natural History Registry for Necrotizing Enterocolitis (NEC Registry) will provide a
complete picture of each patient’s experience with NEC,” said Stephanie M. Vaughan,
Co-founder and President, Morgan’s Fund. “The NEC Registry is a platform for every baby
(be they living or deceased), every family affected by NEC to help shape future research in
NEC. It is a unique opportunity to drive this research to answer their unanswered questions
and find a cure.”

To drive awareness and participation, Morgan’s Fund will promote the registry via mass media. Morgan’s Fund will target patients and their families or caretakers, and relevant NEC experts including neonatologists, clinicians and researchers.

“Our goal is to enroll as many patients, or their parents or legal guardians, as possible,” said Ms. Vaughan. “The success of the registry is dependent upon community participation.”

The NEC Registry is a natural history study registry that consists of electronic surveys to collect information about the patient experience and disease progression. Patients, or their caregivers or guardians can enter information from anywhere in the world. The data is made anonymous and stored securely in an online portal called a registry. Morgan’s Fund may share the data but not your personal identifying information with individuals or institutions conducting research or clinical trials, as approved by the study’s governing board that includes scientists, doctors and patient advocates.

Morgan’s Fund is launching the NEC Registry in collaboration with the National Organization for Rare Disorders (NORD), an independent charity that built its natural history study platform as part of its mission to help identify and treat all 7,000 rare diseases. Funding is supported by a cooperative agreement between NORD and the U.S. Food and Drug Administration (FDA). The FDA has praised NORD’s program as a helpful tool “that protects the security and privacy of personal information, while making valuable information available to a researcher or drug developer interested in creating a new therapy for a rare disease.”1

NORD President and CEO Peter L. Saltonstall said, “NORD’s natural history studies platform empowers patients and families to drive research and eliminate some of the unknowns that still exist in rare diseases.  We are glad to be working with our Member Organization on this project and thank the FDA for its support and ongoing commitment to help people with rare diseases.”

  • NEC is a rare disorder that is predominately due to prematurity.
  • NEC is the second leading cause of death in premature infants.2
  • NEC is the 8th leading cause of death during the newborn period (the first 28 days of life) in the United States.3
  • NEC occurs in approximately 25,000 American babies per year.4

For more information, visit NECregistry.org

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About The Morgan Leary Vaughan Fund

The Morgan Leary Vaughan Fund (Morgan’s Fund) is an all-volunteer, public charity dedicated to Necrotizing Enterocolitis (NEC). Its mission is to promote public awareness about NEC and the potentially devastating effects it can have on preemies and their families, and to advance research to prevent, diagnose, treat, and ultimately, cure NEC. Named after Morgan, it celebrates his survival, courage and strength.

Morgan and his twin brother were born at 28 weeks, one day gestation—nearly three months early—each weighing less than 2.5 pounds. At four days old, Morgan developed NEC and lost approximately 20% of his small intestine. Morgan not only survived but also has thrived since his bout with NEC. This is his family’s way of paying it forward. Morgan’s Fund is a proud member of the National Organization for Rare Disorders and the Preemie Parent Alliance.

About National Organization for Rare Disorders (NORD)

An independent 501(c)(3) nonprofit organization, NORD is the leading advocacy organization representing all patients and families affected by rare diseases in the U.S. Established in 1983, NORD is committed to the identification, treatment and cure of the 7,000 rare diseases that affect 30 million Americans, or 1 in every 10 people, through programs of advocacy, education, research, and patient/family services. In addition to educational resources for patients, families, medical professionals and students available on its website (www.rarediseases.org), NORD represents 250 member organizations and collaborates with many others in specific causes of importance to the rare disease patient community.

Contact: Mary L. Midolo, Registry Administrator, NECregistry@morgansfund.org or +1-203-606-4873

Footnotes:

  1. Woodcock, J. “The more we know about rare diseases, the more likely we are to find safe and effective treatments.” FDAVoice (Oct. 23, 2014)
  2. UC Davis Health System. Newsroom. All Probiotics Are Not the Same in Protecting Premature Infants from Common, Life-threatening Illness. UC Davis Health System. University of California, Davis, Health System, 17 Oct. 2013. Web.
  3. Heron M. Deaths: Leading Causes for 2012. Nation vital statistics reports; vol 62 no. 10. Hyattsville, MD: National Center for Health Statistics. 2015.
  4. “Necrotizing Enterocolitis (NEC).” www.pediatricsurgerymd.org. The American Pediatric Surgical Association. n.d. Web. 24 January 2016. <http://www.pediatricsurgerymd.org/AM/Template.cfm?Section=Conditions&template=/CM/ContentDisplay.cfm& ContentID=4298>

Hummingbird IRB Approved 12/21/2016.

MORGAN’S FUND ISSUES STATEMENT ON SELECTION FOR NORD’S NATURAL HISTORY STUDIES PROJECT

(MILFORD, Connecticut)—April 21, 2016—The following statement was issued by Stephanie M. Vaughan, Co-founder and President of The Morgan Leary Vaughan Fund (Morgan’s Fund), regarding the announcement of the National Organization for Rare Disorders’ (NORD) selection of Natural History Studies Project participants.

On behalf of Morgan’s Fund, I want to thank NORD and their selection committee for choosing to assist us with the development of a Natural History Study Registry for Necrotizing Enterocolitis (NEC).

NORD recognizes that 1 in 10 Americans living with rare diseases are mostly children. NEC is an 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) in the United States. NEC occurs in approximately 25,000 American babies per year. All newborn infants born prematurely (before 37 weeks of pregnancy) or born with a low birth weight (less than 5.5 pounds) are at an 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, APSA and NICHD.)

Our goal in founding Morgan’s Fund has always been to be for others the resource which we could not find. Morgan’s Fund was the first public charity dedicated to NEC in the US. Morgan’s Fund was the first patient organization to partner with NORD to advocate for NEC as a rare disease. Morgan’s Fund is honored to be among those selected to participate in this unique, collaborative research project because despite being a leading cause of mortality and morbidity for premature infants, NEC has yet to receive adequate attention in terms of awareness, resources, and funding for future research and improvements in practice.

I also want to thank The Petit Family Foundation for their grant of $5,000 to support our development of a Natural History Study Registry for NEC.

Stephanie M. Vaughan Co-founder and President, The Morgan Leary Vaughan Fund

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About The Morgan Leary Vaughan Fund, Inc.

The Morgan Leary Vaughan Fund (Morgan’s Fund) is an all-volunteer, public charity dedicated to Necrotizing Enterocolitis (NEC). Its mission is to promote public awareness about NEC and the potentially devastating effects it can have on preemies and their families, and to advance research to prevent, diagnose, treat, and ultimately, cure NEC. Named after Morgan, it celebrates his survival, courage and strength.

Morgan and his twin brother were born at 28 weeks, one day gestation—nearly three months early—each weighing less than 2.5 pounds. At four days old, Morgan developed NEC and lost approximately 20% of his small intestine. Morgan not only survived but has also thrived since his bout with NEC. This is his family’s way of paying it forward.

Speaking of NEC Podcast ArtSPEAKING OF NEC PODCAST RETROSPECTIVE
LAUNCHES FEBRUARY 28

(MILFORD, Connecticut) —February 27, 2016—Produced by The Morgan Leary Vaughan Fund, and funded by The Petit Family Foundation, Speaking of NEC is a series of one-on-one conversations with relevant NEC experts—neonatologists, clinicians and researchers—that highlights current prevention, diagnosis, and treatment strategies for NEC, and the search for a cure.

Year in Review—The Epilogue to Speaking of NEC

In Episode 12, Stephanie Vaughan, Co-founder and President of The Morgan Leary Vaughan Fund, goes from Speaking of NEC: Necrotizing Enterocolitis host to guest as media broadcaster Jeff Bradbury turns the microphone on her for a retrospective. Stephanie reflects on the podcast series itself, and her experiences as a mother-turned-prematurity-and-rare-disease-advocate-turned-podcaster. She also looks towards the future for The Morgan Leary Vaughan Fund.

Episode 12 launches on Sunday, February 28, 2016 at noon EST, and will be available to listen to, or download, at www.morgansfund.org/speaking-of-nec-episode-12 or on iTunes.

This episode was produced in part by the Teacher Cast Educational Broadcasting Network. For more information about Speaking of NEC or The Morgan Leary Vaughan Fund, visit our website at morgansfund.org.

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About The Morgan Leary Vaughan Fund, Inc.

The Morgan Leary Vaughan Fund (Morgan’s Fund) is an all-volunteer, public charity dedicated to Necrotizing Enterocolitis (NEC). Its mission is to promote public awareness about NEC and the potentially devastating effects it can have on preemies and their families, and to advance research to prevent, diagnose, treat, and ultimately, cure NEC. Named after Morgan, it celebrates his survival, courage and strength.

Morgan and his twin brother were born at 28 weeks, one day gestation—nearly three months early—each weighing less than 2.5 pounds. At four days old, Morgan developed NEC and lost approximately 20% of his small intestine. Morgan not only survived but has also thrived since his bout with NEC. This is his family’s way of paying it forward.

About The Petit Family Foundation

The Petit Family Foundation honors the memories of Jennifer Hawke-Petit, Hayley Elizabeth Petit and Michaela Rose Petit by continuing the kindness, idealism and activism that defined their lives. The Foundation’s funds are given to foster the education of young people, especially women in the sciences; to improve the lives of those affected by chronic illnesses; and to support efforts to protect and help those affected by violence.

Dr. Corrine Hanson

Dr. Corrine Hanson. Photo courtesy of Dr. Corrine Hanson.

SPEAKING OF NEC PODCAST FEATURING
DR. CORRINE HANSON RECENTLY LAUNCHED

(MILFORD, Connecticut) —February 1, 2016—Produced by The Morgan Leary Vaughan Fund, and funded by The Petit Family Foundation, Speaking of NEC is a series of one-on-one conversations with relevant NEC experts—neonatologists, clinicians and researchers—that highlights current prevention, diagnosis, and treatment strategies for NEC, and the search for a cure.

Nutrition Practices in the NICU—
Perspectives from Dr. Corrine Hanson

Episode 11 features Dr. Corrine Hanson, Associate Professor in the Division of Medical Nutrition Education, College of Allied Health Professions, University of Nebraska Medical Center (Omaha, NE). Dr. Hanson provides a comprehensive overview of standardized feeding protocols as they apply primarily to very low birth weight babies, those weighing less than 1500 grams (3 pounds 4.91 ounces) and who have the greatest risk for developing the NEC. She discusses:

  • The nutritional needs of very low birth weight babies
  • The importance, and inherent challenges, of initiating the feeding of premature babies
  • What constitutes standardized feeding protocols
  • How standardized feeding protocols appear to decrease rates of NEC and improve outcomes
  • Nutritional support related to a secondary diagnosis of Short Bowel Syndrome.

Episode 11 recently launched, and is available to listen to, or download, at www.morgansfund.org/speaking-of-nec-episode-11 or on iTunes.

This episode was produced in part by the Teacher Cast Educational Broadcasting Network. For more information about Speaking of NEC or The Morgan Leary Vaughan Fund, visit our website at morgansfund.org.

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About The Morgan Leary Vaughan Fund, Inc.

The Morgan Leary Vaughan Fund (Morgan’s Fund) is an all-volunteer, public charity dedicated to Necrotizing Enterocolitis (NEC). Its mission is to promote public awareness about NEC and the potentially devastating effects it can have on preemies and their families, and to advance research to prevent, diagnose, treat, and ultimately, cure NEC. Named after Morgan, it celebrates his survival, courage and strength.

Morgan and his twin brother were born at 28 weeks, one day gestation—nearly three months early—each weighing less than 2.5 pounds. At four days old, Morgan developed NEC and lost approximately 20% of his small intestine. Morgan not only survived but has also thrived since his bout with NEC. This is his family’s way of paying it forward.

About The Petit Family Foundation

The Petit Family Foundation honors the memories of Jennifer Hawke-Petit, Hayley Elizabeth Petit and Michaela Rose Petit by continuing the kindness, idealism and activism that defined their lives. The Foundation’s funds are given to foster the education of young people, especially women in the sciences; to improve the lives of those affected by chronic illnesses; and to support efforts to protect and help those affected by violence.

About Dr. Corrine Hanson

Dr. Hanson is a tenure-track Associate Professor in the Division of Medical Nutrition Education, College of Allied Health Professions, University of Nebraska Medical Center, and holds the M. Patricia and James W. Leuschen Professorship for Advancing Research in the Allied Health Professions. She is a skilled Medical Nutrition Therapist with extensive experience in the management of nutrition and premature infants. Her career is dedicated to understanding effects of nutrition on the promotion of health and the development and progression of disease over the life course, with a specific emphasis on nutrition in premature infants. Her work examining the implementation of evidence-based nutrition practice changes in a (NICU) setting resulting in a decrease in bronchopulmonary dysplasia, extra-uterine growth restriction, and length of stay. She has served as a consultant on an NIH funded grant to reduce the incidence of necrotizing enterocolitis. Her work with vitamin D status of premature infants have led to changes in vitamin D supplementation practices, and she has also shown that vitamin D metabolism in infants is different from adults.

Dr. Sergio Golombek

Dr. Sergio Golombek. Photo courtesy of Dr. Sergio Golombek.

SPEAKING OF NEC PODCAST FEATURING
DR. SERGIO GOLOMBEK RECENTLY LAUNCHED

(MILFORD, Connecticut) —December 31, 2015—Produced by The Morgan Leary Vaughan Fund, and funded by The Petit Family Foundation, Speaking of NEC is a series of one-on-one conversations with relevant NEC experts—neonatologists, clinicians and researchers—that highlights current prevention, diagnosis, and treatment strategies for NEC, and the search for a cure.

Current Trends in NEC—Perspectives from
Dr. Sergio Golombek

Episode 10 features Dr. Sergio Golombek, a Professor of Pediatrics and Clinical Public Health at the New York Medical College and an Attending Neonatologist at The Regional Neonatal Center, Maria Fareri Children’s Hospital at Westchester Medical Center (Valhalla, NY). During the episode, Dr. Golombek discusses:

  • How researchers are refining the definition of NEC, and other prematurity-associated complications that may currently fall under that umbrella term,
  • The evolution in prevention and diagnosis strategies of NEC,
  • The colonization of the intestinal microbiome, and the role it can play in immune system regulation, and inflammatory diseases like NEC,
  • Additional research trends in NEC, including his unit’s research of granulocyte-colony stimulating factor (G-CSF) in the prevention and treatment of NEC, and
  • The importance of individualized patient care in the NICU.

Episode 10 recently launched, and is available to listen to, or download, at www.morgansfund.org/speaking-of-nec-episode-10 or on iTunes.

This episode was produced in part by the Teacher Cast Educational Broadcasting Network. For more information about Speaking of NEC or The Morgan Leary Vaughan Fund, visit our website at www.morgansfund.org.

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About The Morgan Leary Vaughan Fund, Inc.

The Morgan Leary Vaughan Fund (Morgan’s Fund) is an all-volunteer, public charity dedicated to Necrotizing Enterocolitis (NEC). Its mission is to promote public awareness about NEC and the potentially devastating effects it can have on preemies and their families, and to advance research to prevent, diagnose, treat, and ultimately, cure NEC. Named after Morgan, it celebrates his survival, courage and strength.

Morgan and his twin brother were born at 28 weeks, one day gestation—nearly three months early—each weighing less than 2.5 pounds. At four days old, Morgan developed NEC and lost approximately 20% of his small intestine. Morgan not only survived but has also thrived since his bout with NEC. This is his family’s way of paying it forward.

About The Petit Family Foundation

The Petit Family Foundation honors the memories of Jennifer Hawke-Petit, Hayley Elizabeth Petit and Michaela Rose Petit by continuing the kindness, idealism and activism that defined their lives. The Foundation’s funds are given to foster the education of young people, especially women in the sciences; to improve the lives of those affected by chronic illnesses; and to support efforts to protect and help those affected by violence.

About Maria Fareri Children’s Hospital, a Member of the Westchester Medical Center Health Network

Maria Fareri Children’s Hospital is the children’s hospital for New York’s Hudson Valley region and Fairfield County, Connecticut. Located in Valhalla, NY, this 136-bed advanced pediatrics facility cares for the region’s most seriously ill and injured children including those in need of cardiac surgery, neurosurgery, hematology and oncology treatments, organ transplants and other specialty pediatric services. Maria Fareri Children’s Hospital is also home to the area’s only Pediatric Intensive Care Unit, Level I pediatric trauma and burn care programs and its Regional Neonatal Intensive Care Unit. For more information on Maria Fareri Children’s Hospital, interested parties can visit www.WestchesterMedicalCenter.org/MFCH or follow the hospital at www.Facebook.com/MFCHatWMC and www.Twitter.com/MFCHatWMC.

About Westchester Medical Center Health Network

The Westchester Medical Center Health Network (WMCHealth) is a 1,500-bed healthcare system headquartered in Valhalla, NY, spanning seven hospitals and several campuses and locations in the Hudson Valley. WMCHealth employs more than 10,000 people, with nearly 3,000 attending physicians. From Level 1 and Level 2 Trauma Centers, the region’s only acute care children’s hospital, an academic medical center, several community hospitals and numerous health-related centers, programs and services, today WMCHealth is the leading and pre-eminent provider of integrated health in the Hudson Valley. For more information about WMCHealth, visit www.WMCHealth.org

Yamile Jackson

Yamile Jackson. Photo courtesy of Nurtured by Design.

SPEAKING OF NEC PODCAST FEATURING
NEONATAL ERGONOMICS EXPERT YAMILE JACKSON
RECENTLY LAUNCHED

(MILFORD, Connecticut)–December 1, 2015–Produced by The Morgan Leary Vaughan Fund, and funded by The Petit Family Foundation, Speaking of NEC is a series of one-on-one conversations with relevant Necrotizing Enterocolitis (NEC) experts—neonatologists, clinicians and researchers—that highlights current prevention, diagnosis, and treatment strategies for NEC, and the search for a cure.

Ep. 9: Developmental Care in the NICU—Perspectives from Yamile Jackson, PhD, PE, PMP

Episode 9 features Yamile Jackson, expert parent, Founder and CEO of Nurtured by Design, and award-winning inventor/designer of The Zaky and the Kangaroo Zak. During the episode, Yamile provides a comprehensive overview of Kangaroo Care and ergonomics as related to premature infants and the NICU environment. Yamile also shares her son Zachary’s story of prematurity and survival including a near fatal encounter with a natural disaster during his NICU stay, and how their experience led her to found Nurtured by Design—the first in its class, global leader in neonatal ergonomics. She discusses:

  • The premature birth of her son Zachary at 28 weeks,
  • How Zachary had to be kept alive by hand for 9 hours after Tropical Storm Allison shut down their hospital,
  • How hers and her family’s experience with prematurity led her to invent The Zaky and the Kangaroo Zak,
  • The clinical evidence showing a 50% reduction in apnea and bradycardia events with the use of The Zaky, no events with the use of a maternally-scented Zaky, and 30 times more effective self-regulation with the use of a maternally-scented Zaky,
  • The importance of developmental care and family-centered care in the NICU.

Episode 9 recently launched, and is available to listen to, or download, at www.morgansfund.org/speaking-of-nec-episode-9 or on iTunes.

This episode was produced in part by the TeacherCast Educational Broadcasting Network. For more information about Speaking of NEC or The Morgan Leary Vaughan Fund, visit morgansfund.org.

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About The Morgan Leary Vaughan Fund, Inc.

The Morgan Leary Vaughan Fund (Morgan’s Fund) is an all-volunteer, public charity dedicated to Necrotizing Enterocolitis (NEC). Its mission is to promote public awareness about NEC and the potentially devastating effects it can have on preemies and their families, and to advance research to prevent, diagnose, treat, and ultimately, cure NEC. Named after Morgan, it celebrates his survival, courage and strength.

Morgan and his twin brother were born at 28 weeks, one day gestation—nearly three months early—each weighing less than 2.5 pounds. At four days old, Morgan developed NEC and lost approximately 20% of his small intestine. Morgan not only survived but has also thrived since his bout with NEC. This is his family’s way of paying it forward.

About The Petit Family Foundation

The Petit Family Foundation honors the memories of Jennifer Hawke-Petit, Hayley Elizabeth Petit and Michaela Rose Petit by continuing the kindness, idealism and activism that defined their lives. The Foundation’s funds are given to foster the education of young people, especially women in the sciences; to improve the lives of those affected by chronic illnesses; and to support efforts to protect and help those affected by violence.

About Yamile Jackson, PhD, PE, PMP

Consultant, trainer, pioneer & global leader in life sciences successfully applying ergonomics and safety engineering to humanize the care of babies and provide family centered developmental care for every newborn (healthy, ill, or premature) reducing cost, improve healthcare outcomes and improve family/patient satisfaction. All without expensive equipment, medication/stimulants or invasive procedures.

Inventor of The Zaky, the only family centered developmental care and evidence-based device for babies in the market today. Results of the independent randomized research at the Regional Medical Center of Central Georgia (funded by Georgia College) suggest that, for the babies in the study (24-38 wk gestation), The Zakys significantly improved self-regulation/organization, & reduced to Zero the apnea/bradycardia (imperative for sleep) – The groundbreaking results presented at APHA’s Annual Conference: http://fwd4.me/05oI and at NANN 2012.

Designer of the Kangaroo Zak: secures baby during skin-to-skin sessions and facilitates safe, hands-free, prolonged, and ergonomic environment for baby and adult in hospitals and home.

Dr. Sheila Gephart

Dr. Sheila Gephart. Photo courtesy of Dr. Sheila Gephart.

SPEAKING OF NEC PODCAST FEATURING DR. SHEILA GEPHART LAUNCHES OCTOBER 28

(MILFORD, Connecticut)–October 26, 2015–Produced by The Morgan Leary Vaughan Fund, and funded by The Petit Family Foundation, Speaking of NEC is a series of one-on-one conversations with relevant Necrotizing Enterocolitis (NEC) experts—neonatologists, clinicians and researchers—that highlights current prevention, diagnosis, and treatment strategies for NEC, and the search for a cure.

Ep. 8: GutCheckNEC—A Comprehensive Overview of Risk Assessment with Dr. Sheila Gephart

Episode 8 features Dr. Sheila Gephart, neonatal nurse scientist and assistant professor at the University of Arizona College of Nursing. During this episode, Dr. Gephart provides a comprehensive overview of GutCheckNEC, a first-of-its-kind, 10-item risk assessment that she developed for the early detection of NEC in premature infants. She discusses:

  • Her transition from bedside nurse in the neonatal intensive care unit to her development of GutCheckNEC—what she calls a “real-time, early warning score for NEC,”
  • The 10 risk factors that make up GutCheckNEC, their associated symptoms, and how risk is communicated,
  • The development of NEC-Zero, an intervention that has evolved out of the Unit NEC rate component of GutCheckNEC,
  • The strength of evidence for the use of probiotics in the prevention of NEC, and
  • The importance of shared decision making in the NICU.

Episode 8 launches on Wednesday, October 28, 2015 at noon EDT, and will be available to listen to, or download, at www.morgansfund.org/speaking-of-nec-episode-8 or on iTunes.

This episode was produced in part by the TeacherCast Educational Broadcasting Network. For more information about Speaking of NEC or The Morgan Leary Vaughan Fund, visit morgansfund.org.

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About The Morgan Leary Vaughan Fund, Inc.

The Morgan Leary Vaughan Fund (Morgan’s Fund) is an all-volunteer, public charity dedicated to Necrotizing Enterocolitis (NEC). Its mission is to promote public awareness about NEC and the potentially devastating effects it can have on preemies and their families, and to advance research to prevent, diagnose, treat, and ultimately, cure NEC. Named after Morgan, it celebrates his survival, courage and strength.

Morgan and his twin brother were born at 28 weeks, one day gestation — nearly three months early — each weighing less than 2.5 pounds. At four days old, Morgan developed NEC and lost approximately 20% of his small intestine. Morgan not only survived but has also thrived since his bout with NEC. This is his family’s way of paying it forward.

About The Petit Family Foundation

The Petit Family Foundation honors the memories of Jennifer Hawke-Petit, Hayley Elizabeth Petit and Michaela Rose Petit by continuing the kindness, idealism and activism that defined their lives. The Foundation’s funds are given to foster the education of young people, especially women in the sciences; to improve the lives of those affected by chronic illnesses; and to support efforts to protect and help those affected by violence.

About Sheila Gephart, PhD, RN

Sheila Gephart, Ph.D., RN, is passionate and has dedicated her research and nursing practice to address the adoption of prevention and early recognition practices of necrotizing enterocolitis (NEC) among premature infants. As Principal Investigator for the NEC-Zero Project, she utilizes the application of evidence-based practice to improve neonatal outcomes, and has developed an early warning score for necrotizing enterocolitis called GutCheckNEC and has been working to integrate it into a smart alerting system in the Electronic Health Record.

Dr. Gephart knows first hand that parents play a fundamental role in NEC prevention but have insufficiently been involved as partners. Clinical decision support (CDS) has been shown to improve adherence of care across settings and is used as a way of engagement and integration of prevention practices into the clinical workflow. The central hypothesis of this model is that adherence to guideline-recommended NEC prevention and early recognition practices (called “NEC-Zero”) will improve when delivered using CDS and NEC disease will decline. This approach has been funded by the National Institute of Nursing Research, the Robert Wood Johnson Foundation and the Agency for Healthcare Research and Quality.

Dr. Gephart earned her BSN from OHSU in 1998 and her Ph.D. from the University of Arizona in nursing with a minor in informatics in 2012. Serving as a scientific advisory board member for the NEC Society, she is inspired daily to continue her work to spread best practices for NEC prevention and early recognition. She grew up in Oregon as 3rd of 7 children. Now residing in Tucson, Arizona she and her husband, Dave, have 3 daughters and enjoy traveling in their spare time.

Jennifer Canvasser

Jennifer Canvasser. Photo courtesy of Jennifer Canvasser.

SPEAKING OF NEC PODCAST FEATURING
THE NEC SOCIETY LAUNCHES SEPTEMBER 28

(MILFORD, Connecticut)–September 24, 2015–Produced by The Morgan Leary Vaughan Fund, and funded by The Petit Family Foundation, Speaking of NEC is a series of one-on-one conversations with relevant Necrotizing Enterocolitis (NEC) experts—neonatologists, clinicians and researchers—that highlights current prevention, diagnosis, and treatment strategies for NEC, and the search for a cure.

Ep. 7: The NEC Society—Perspectives from Parents of Infants Impacted by NEC

Episode 7 features Jennifer Canvasser, Founder of the NEC Society, and Dr. Samir Gadepalli, NEC Society scientific advisory council member. In 2014, Jennifer founded the NEC Society, a non-profit organization dedicated to protecting fragile infants, after losing her son, Micah, to Necrotizing Enterocolitis.

During the episode, Jennifer and Samir share the findings from the NEC Society’s survey aimed at characterizing parent perceptions of the practices and events related to their child’s development of NEC. They discuss:

  • The design and development of the NEC Society’s online, international survey—research specifically focused on parents and their perspectives on NEC,
  • The survey’s five areas of interest: education, awareness, support of human milk, information provided and information providers, and parental empowerment in the NICU,
  • The survey findings including the demographics of the participants and their babies—all of whom were diagnosed with NEC,
  • The importance of raising awareness about NEC in the general public,
  • The NEC Society’s partnership with the Best for Babes Foundation® and the Miracle MilkTM Stroll, and
  • The NEC Society’s recently announced conference, Necrotizing Enterocolitis Symposium: A Transdisciplinary Approach to Improved NEC Outcomes, in partnership with the University of California at Davis, and set for 2017.

Episode 7 launches on Monday, September 28, 2015 at noon EDT, and will be available to listen to, or download, at www.morgansfund.org/speaking-of-nec-episode-7 or on iTunes.

This episode was produced in part by the TeacherCast Educational Broadcasting Network. For more information about Speaking of NEC or The Morgan Leary Vaughan Fund, visit morgansfund.org.

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About The Morgan Leary Vaughan Fund, Inc.

The Morgan Leary Vaughan Fund (Morgan’s Fund) is an all-volunteer, public charity dedicated to Necrotizing Enterocolitis (NEC). Its mission is to promote public awareness about NEC and the potentially devastating effects it can have on preemies and their families, and to advance research to prevent, diagnose, treat, and ultimately, cure NEC. Named after Morgan, it celebrates his survival, courage and strength.

Morgan and his twin brother were born at 28 weeks, one day gestation — nearly three months early — each weighing less than 2.5 pounds. At four days old, Morgan developed NEC and lost approximately 20% of his small intestine. Morgan not only survived but has also thrived since his bout with NEC. This is his family’s way of paying it forward.

About The Petit Family Foundation

The Petit Family Foundation honors the memories of Jennifer Hawke-Petit, Hayley Elizabeth Petit and Michaela Rose Petit by continuing the kindness, idealism and activism that defined their lives. The Foundation’s funds are given to foster the education of young people, especially women in the sciences; to improve the lives of those affected by chronic illnesses; and to support efforts to protect and help those affected by violence.

About the NEC Society

The NEC Society is a non-profit, tax-exempt, 501c3 organization, made up of a diverse group of healthcare practitioners, researchers, and families from across the country who seek to protect premature infants from Necrotizing Enterocolitis.

Necrotizing Enterocolitis (NEC) is a devastating intestinal disease that affects thousands of premature infants every year in the United States. Through education, outreach, research, and advocacy, we are committed to reducing the incidence of Necrotizing Enterocolitis.

SPEAKING OF NEC PODCAST FEATURING LAURA MARTIN LAUNCHES AUGUST 28

Laura Martin

Laura Martin. Photo courtesy of Laura Martin.

(MILFORD, Connecticut)–August 25, 2015–Produced by The Morgan Leary Vaughan Fund, and funded by The Petit Family Foundation, Speaking of NEC is a series of one-on-one conversations with relevant Necrotizing Enterocolitis (NEC) experts—neonatologists, clinicians and researchers—that highlights current prevention, diagnosis, and treatment strategies for NEC, and the search for a cure.

Ep. 6: Joseph’s Story — An Expert Parent’s Perspective on Late-onset NEC and Short Bowel Syndrome

Episode 6 features Laura Martin, expert parent, mom blogger at Joseph at Home, and the Director of Parent Communication and Engagement at Graham’s Foundation – a non-profit organization that supports parents of premature infants.

During the episode, Laura shares her son Joseph’s story of prematurity and survival including his near fatal bout of late-onset NEC and the multitude of life-long complications that have resulted. She discusses:

  • The extremely premature birth of her twin sons, Joseph and Campbell, at 24 weeks — four months early, and Campbell’s passing at 23 days of life,
  • How Joseph developed late-onset NEC and lost two-thirds of his small intestine,
  • Several of Joseph’s secondary diagnoses including Short Bowel Syndrome, Auditory Neuropathy Spectrum Disorder, Eosinophilic Esophagitis, and multiple food allergies – all resulting from NEC,
  • How hers and her family’s experience with prematurity led to her work at Graham’s Foundation,
  • Her personal blog where she documents her daily life as an expert parent of a child with special needs.

Episode 6 launches on Friday, August 28, 2015 at noon EDT, and will be available to listen to, or download, at www.morgansfund.org/speaking-of-nec-episode-6 or on iTunes.

This episode was produced in part by the TeacherCast Educational Broadcasting Network. For more information about Speaking of NEC or The Morgan Leary Vaughan Fund, visit morgansfund.org.

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About The Morgan Leary Vaughan Fund, Inc.

The Morgan Leary Vaughan Fund (Morgan’s Fund) is an all-volunteer, public charity dedicated to Necrotizing Enterocolitis (NEC). Its mission is to promote public awareness about NEC and the potentially devastating effects it can have on preemies and their families, and to advance research to prevent, diagnose, treat, and ultimately, cure NEC. Named after Morgan, it celebrates his survival, courage and strength.

Morgan and his twin brother were born at 28 weeks, one day gestation — nearly three months early — each weighing less than 2.5 pounds. At four days old, Morgan developed NEC and lost approximately 20% of his small intestine. Morgan not only survived but has also thrived since his bout with NEC. This is his family’s way of paying it forward.

About The Petit Family Foundation

The Petit Family Foundation honors the memories of Jennifer Hawke-Petit, Hayley Elizabeth Petit and Michaela Rose Petit by continuing the kindness, idealism and activism that defined their lives. The Foundation’s funds are given to foster the education of young people, especially women in the sciences; to improve the lives of those affected by chronic illnesses; and to support efforts to protect and help those affected by violence.

About Laura Martin

Laura Burgess Martin is a cum laude graduate of Converse College in Spartanburg, SC where she studied both flute and piano and received a Bachelor of Music in Music Education degree. She received her Master of Music in Music Education degree from the University of Georgia. Laura taught middle school in metro Atlanta for five years before staying home with her children.

Laura is the Director of Parent Communication and Engagement at Graham’s Foundation, a non-profit organization that offers practical and emotional support to parents of premature infants. She also serves as the Necrotizing Enterocolitis mentor as a part of the parent mentor program through Graham’s Foundation.

In addition to her blogging at Graham’s Foundation, Laura maintains her personal blog, Joseph at Home. Joseph at Home (http://josephathome.com) chronicles Joseph’s journey as a survivor twin since his birth at 24 weeks gestation. What began as a blog to keep friends and family updated on Joseph’s premature birth is now a blog about her family and their life raising a child with multiple special needs as a result of his premature birth. Laura is also an advocate for children and families raising children with special needs.

In addition to her blogging for Graham’s Foundation and her personal blog, Laura has had several articles published for Preemie Babies 101 and Complex Child e-magazine. In 2014, Laura was named one of Converse College’s 125 Outstanding Alumnae in honor of the college’s 125th anniversary.

Laura is the proud wife of Scott, and mom of two – Joseph and Emily. Laura resides in a suburb of Atlanta, Georgia.

SPEAKING OF NEC PODCAST FEATURING DR. NAVEED HUSSAIN LAUNCHES JULY 28

Dr. Naveed Hussain

Dr. Naveed Hussain. Photo courtesy of Dr. Naveed Hussain.

(MILFORD, Connecticut)–July 24, 2015–Produced by The Morgan Leary Vaughan Fund, and funded by The Petit Family Foundation, Speaking of NEC is a series of one-on-one conversations with relevant Necrotizing Enterocolitis (NEC) experts—neonatologists, clinicians and researchers—that highlights current prevention, diagnosis, and treatment strategies for NEC, and the search for a cure.

Episode 5: What is TANEC?—An Overview of Transfusion-associated Necrotizing Enterocolitis with Dr. Naveed Hussain

Episode 5 features Dr. Naveed Hussain, Associate Professor of Pediatrics at the University of Connecticut School of Medicine and Director, Neonatal Research and Neonatologist at Connecticut Children’s NICU at University of Connecticut Health Center in Farmington, CT. During the episode, Dr. Hussain provides an overview of transfusion associated NEC, or TANEC, as it relates primarily to extremely low birth weight babies, those weighing less than 1000 grams (2 pounds 3 ounces) or those born very premature at less than 28 weeks gestation, and who have the greatest risk for developing the disease. He discusses:

  • The significant role of blood transfusions in the NICU, and the frequency with which they may be required
  • What constitutes transfusion associated NEC, and some of the controversies surrounding TANEC
  • The critical period after a blood transfusion when a premature baby may be most at risk for developing NEC
  • Some of the correlations between blood transfusions, feedings, and NEC
  • His current research focused on the epidemiology (patterns of occurrences) of NEC
  • Additional technology and protocol trends in the prevention of NEC.

Episode 5 launches on Tuesday, July 28, 2015 at noon EDT, and will be available to listen to, or download, at www.morgansfund.org/speaking-of-nec-episode-5 or on iTunes.

This episode was produced in part by the TeacherCast Educational Broadcasting Network. For more information about Speaking of NEC or The Morgan Leary Vaughan Fund, visit morgansfund.org.

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About The Morgan Leary Vaughan Fund, Inc.

The Morgan Leary Vaughan Fund (Morgan’s Fund) is an all-volunteer, public charity dedicated to Necrotizing Enterocolitis (NEC). Its mission is to promote public awareness about NEC and the potentially devastating effects it can have on preemies and their families, and to advance research to prevent, diagnose, treat, and ultimately, cure NEC. Named after Morgan, it celebrates his survival, courage and strength.

Morgan and his twin brother were born at 28 weeks, one day gestation — nearly three months early — each weighing less than 2.5 pounds. At four days old, Morgan developed NEC and lost approximately 20% of his small intestine. Morgan not only survived but has also thrived since his bout with NEC. This is his family’s way of paying it forward.

About The Petit Family Foundation

The Petit Family Foundation honors the memories of Jennifer Hawke-Petit, Hayley Elizabeth Petit and Michaela Rose Petit by continuing the kindness, idealism and activism that defined their lives. The Foundation’s funds are given to foster the education of young people, especially women in the sciences; to improve the lives of those affected by chronic illnesses; and to support efforts to protect and help those affected by violence.

About Connecticut Children’s Medical Center

Connecticut Children’s Medical Center is a nationally recognized, 187-bed not-for-profit children’s hospital serving as the primary teaching hospital for the Department of Pediatrics at the University of Connecticut School of Medicine. Named among the best in the nation in the annual U.S. News & World Report “Best Children’s Hospitals” rankings, Connecticut Children’s is the only free-standing children’s hospital in Connecticut that offers comprehensive, world-class health care to children. Our pediatric services are available at Connecticut Children’s Medical Center in Hartford and at Saint Mary’s Hospital in Waterbury, with neonatal intensive care units at Hartford Hospital and the University of Connecticut Health Center, along with a state-of-the-art ambulatory surgery center, five specialty care centers and 11 other locations across the state. Connecticut Children’s has a medical staff of nearly 1,100 practicing in more than 30 specialties.
For more information, visit

SPEAKING OF NEC PODCAST FEATURING DR. MARTIN LEE LAUNCHES JUNE 28

Dr. Martin Lee

Dr. Martin Lee. Photo courtesy of Prolacta.

(MILFORD, Connecticut)–June 24, 2015–Produced by The Morgan Leary Vaughan Fund, and funded by The Petit Family Foundation, Speaking of NEC is a series of one-on-one conversations with relevant Necrotizing Enterocolitis (NEC) experts—neonatologists, clinicians and researchers—that highlights current prevention, diagnosis, and treatment strategies for NEC, and the search for a cure.

Episode 4: 100% Human Milk Diet—Perspectives from Dr. Martin Lee

This episode features Dr. Martin Lee, Vice President of Clinical Research and Development at Prolacta Bioscience. During this episode, Dr. Lee provides a comprehensive overview of a 100% or exclusive human milk diet in the prevention of NEC in extremely premature babies, those weighing less than 1250 grams (2 pounds 12 ounces) and who have the greatest risk for developing the disease. He discusses:

  • His transition from the blood industry to Prolacta, which developed of the world’s first human milk-based human milk fortifier
  • What constitutes a 100% or exclusive human milk diet
  • The clinical evidence showing a 70% reduction in NEC, an 8-fold reduction in surgical NEC, and a 4-fold reduction in mortality through the use of exclusive human milk diet
  • The importance of safety in the breast milk industry, including Prolacta’s rigorous product testing and donor safety profiles which parallel blood industry standards.

Episode 4 launches on Sunday, June 28, 2015 at noon EDT, and will be available to listen to, or download, at morgansfund.org or on iTunes.

This episode was produced in part by the TeacherCast Educational Broadcasting Network. For more information about Speaking of NEC or The Morgan Leary Vaughan Fund, visit morgansfund.org.

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About The Morgan Leary Vaughan Fund, Inc.

The Morgan Leary Vaughan Fund (Morgan’s Fund) is an all-volunteer, public charity dedicated to Necrotizing Enterocolitis (NEC). Its mission is to promote public awareness about NEC and the potentially devastating effects it can have on preemies and their families, and to advance research to prevent, diagnose, treat, and ultimately, cure NEC. Named after Morgan, it celebrates his survival, courage and strength.

Morgan and his twin brother were born at 28 weeks, one day gestation — nearly three months early — each weighing less than 2.5 pounds. At four days old, Morgan developed NEC and lost approximately 20% of his small intestine. Morgan not only survived but has also thrived since his bout with NEC. This is his family’s way of paying it forward.

About The Petit Family Foundation

The Petit Family Foundation honors the memories of Jennifer Hawke-Petit, Hayley Elizabeth Petit and Michaela Rose Petit by continuing the kindness, idealism and activism that defined their lives. The Foundation’s funds are given to foster the education of young people, especially women in the sciences; to improve the lives of those affected by chronic illnesses; and to support efforts to protect and help those affected by violence.

About Prolacta Bioscience

Prolacta Bioscience, Inc. is a privately-held life sciences company dedicated to Advancing the Science of Human Milk.® The company pioneered the development of human milk-based Neonatal Nutritional Products to meet the needs of critically ill, premature infants in the NICU. Prolacta leads the industry in the quality and safety of nutritional products made from breast milk and operates the first and only pharmaceutical-grade manufacturing facility for the processing of human breast milk. For more information please visit www.prolacta.com.

SPEAKING OF NEC PODCAST FEATURING DR. R. LAWRENCE MOSS LAUNCHES MAY 28

Dr. R. Lawrence Moss

Dr. R. Lawrence Moss. Photo courtesy of Nationwide Children’s Hospital

(MILFORD, Connecticut)–May 26, 2015–Produced by The Morgan Leary Vaughan Fund, and funded by The Petit Family Foundation, Speaking of NEC is a series of one-on-one conversations with relevant NEC experts—neonatologists, clinicians and researchers—that highlights current prevention, diagnosis, and treatment strategies for NEC, and the search for a cure.

Episode 3: More on Surgical NEC—Perspectives from Dr. R. Lawrence Moss

This episode features Dr. R. Lawrence Moss, Surgeon-in-Chief at Nationwide Children’s Hospital in Columbus, Ohio. During the episode, Dr. Moss discusses:

  • The two surgical options, laparotomy and perinatal drainage, commonly used to treat NEC
  • His current research of biomarkers (indicators) that can predict the development or course of NEC leading to surgery
  • Genetic predisposition and environmental risk factors of NEC
  • Not-for-profit and industry funding for biomedical research, and some of the inherent challenges specific to NEC
  • The complementary roles of clinical/translational research and basic science research in the prevention and treatment of NEC.

Episode 3 will be available to listen to, or download, on Thursday, May 28, 2015 at noon EDT at: www.morgansfund.org/speaking-of-nec-episode-3

This episode was produced in part by the TeacherCast Educational Broadcasting Network. For more information about Speaking of NEC or The Morgan Leary Vaughan Fund, visit our website at www.morgansfund.org.

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About The Morgan Leary Vaughan Fund, Inc.

The Morgan Leary Vaughan Fund (Morgan’s Fund) is an all-volunteer, public charity dedicated to Necrotizing Enterocolitis (NEC). Its mission is to promote public awareness about NEC and the potentially devastating effects it can have on preemies and their families, and to advance research to prevent, diagnose, treat, and ultimately, cure NEC. Named after Morgan, it celebrates his survival, courage and strength.

Morgan and his twin brother were born at 28 weeks, one day gestation — nearly three months early — each weighing less than 2.5 pounds. At four days old, Morgan developed NEC and lost approximately 20% of his small intestine. Morgan not only survived but has also thrived since his bout with NEC. This is his family’s way of paying it forward.

About The Petit Family Foundation

The Petit Family Foundation honors the memories of Jennifer Hawke-Petit, Hayley Elizabeth Petit and Michaela Rose Petit by continuing the kindness, idealism and activism that defined their lives. The Foundation’s funds are given to foster the education of young people, especially women in the sciences; to improve the lives of those affected by chronic illnesses; and to support efforts to protect and help those affected by violence.

About Nationwide Children’s Hospital 

Ranked 7th of only 10 children’s hospitals on U.S. News & World Report’s 2014-15 “America’s Best Children’s Hospitals Honor Roll” and among the Top 10 on Parents magazine’s 2013 “Best Children’s Hospitals” list, Nationwide Children’s Hospital is one of the nation’s largest not-for-profit freestanding pediatric healthcare networks providing care for infants, children and adolescents as well as adult patients with congenital disease. As home to the Department of Pediatrics of The Ohio State University College of Medicine, Nationwide Children’s faculty train the next generation of pediatricians, scientists and pediatric specialists. The Research Institute at Nationwide Children’s Hospital is one of the Top 10 National Institutes of Health-funded free-standing pediatric research facilities in the U.S., supporting basic, clinical, translational and health services research at Nationwide Children’s. The Research Institute encompasses three research facilities totaling 525,000 square feet dedicated to research. More information is available at NationwideChildrens.org/Research.

SPEAKING OF NEC PODCAST FEATURING DR. ADAM MATSON LAUNCHES APRIL 28

Dr. Adam Matson

Dr. Adam Matson. Photo courtesy of Dr. Adam Matson.

(MILFORD, Connecticut)–April 20, 2015–Produced by The Morgan Leary Vaughan Fund, and funded by The Petit Family Foundation, Speaking of NEC is a series of one-on-one conversations with relevant NEC experts—neonatologists, clinicians and researchers—that highlights current prevention, diagnosis, and treatment strategies for NEC, and the search for a cure.

Speaking of NEC: Episode 2

Episode 2 features Dr. Adam Matson, attending neonatologist at Connecticut Children’s Medical Center-Newborn Intensive Care Unit (Hartford, CT) and Assistant Professor of Pediatrics and Immunology at the University of Connecticut School of Medicine (Farmington, CT). During the episode, Dr. Matson provides a comprehensive overview of NEC as it relates primarily to very low birth weight babies, those weighing less than 1500 grams (3 pounds 4.91 ounces) and who have the greatest risk for developing the disease. He discusses:

  • The early warning signs of NEC, what steps are taken when NEC is suspected, and how X-rays are used to diagnose NEC
  • How a premature baby’s immune response to the microbiome (bacterial communities) of the intestine appears to play a role in the development of NEC
  • Known risk factors of NEC, and how they may affect the intestinal microbiome
  • His current research focused on innate immune signaling in the developing intestine as it pertains to the development of NEC
  • Current prevention strategies for NEC
  • Additional research trends in NEC, and the importance of efforts to prevent prematurity

Episode 2 will be available to listen to, or download, on Tuesday, April 28, 2015 at noon EDT at: www.morgansfund.org/speaking-of-nec-episode-2

This episode was produced in part by the Teacher Cast Educational Broadcasting Network. For more information about Speaking of NEC or The Morgan Leary Vaughan Fund, visit our website at www.morgansfund.org.

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About The Morgan Leary Vaughan Fund, Inc.

The Morgan Leary Vaughan Fund (Morgan’s Fund) is an all-volunteer, public charity dedicated to Necrotizing Enterocolitis (NEC). Its mission is to promote public awareness about NEC and the potentially devastating effects it can have on preemies and their families, and to advance research to prevent, diagnose, treat, and ultimately, cure NEC. Named after Morgan, it celebrates his survival, courage and strength.

Morgan and his twin brother were born at 28 weeks, one day gestation—nearly three months early—each weighing less than 2.5 pounds. At four days old, Morgan developed NEC and lost approximately 20% of his small intestine. Morgan not only survived but has also thrived since his bout with NEC. This is his family’s way of paying it forward. 

About The Petit Family Foundation

The Petit Family Foundation honors the memories of Jennifer Hawke-Petit, Hayley Elizabeth Petit and Michaela Rose Petit by continuing the kindness, idealism and activism that defined their lives. The Foundation’s funds are given to foster the education of young people, especially women in the sciences; to improve the lives of those affected by chronic illnesses; and to support efforts to protect and help those affected by violence.

About Connecticut Children’s Medical Center

Connecticut Children’s Medical Center is a nationally recognized, 187-bed not-for-profit children’s hospital serving as the primary teaching hospital for the Department of Pediatrics at the University of Connecticut School of Medicine. Named among the best in the nation in the annual U.S. News & World Report “Best Children’s Hospitals” rankings, Connecticut Children’s is the only free-standing children’s hospital in Connecticut that offers comprehensive, world-class health care to children. Our pediatric services are available at Connecticut Children’s Medical Center in Hartford and at Saint Mary’s Hospital in Waterbury, with neonatal intensive care units at Hartford Hospital and the University of Connecticut Health Center, along with a state-of-the-art ambulatory surgery center, five specialty care centers and 11 other locations across the state. Connecticut Children’s has a medical staff of nearly 1,100 practicing in more than 30 specialties.
For more information, visit

MORGAN’S FUND LAUNCHES NECROTIZING ENTEROCOLITIS (NEC) PODCAST SERIES: PREMIERE FEATURES DR. GAIL BESNER

Dr. Gail Besner

Dr. Gail Besner. Photo courtesy of Nationwide Children’s Hospital.

(MILFORD, Connecticut)–March 23, 2015–The Morgan Leary Vaughan Fund (Morgan’s Fund) has announced the launch of its free, audio podcast series about Necrotizing Enterocolitis called Speaking of NEC: Necrotizing Enterocolitis.

Produced by The Morgan Leary Vaughan Fund, and funded by The Petit Family Foundation, Speaking of NEC is a series of one-on-one conversations with relevant NEC experts—neonatologists, clinicians and researchers—that highlights current prevention, diagnosis, and treatment strategies for NEC, and the search for a cure.

Episode 1

The premiere episode features Dr. Gail Besner, chief of Pediatric Surgery at Nationwide Children’s Hospital in Columbus, Ohio. During the episode, Dr. Besner discusses:

  • The mortality and morbidity (complications associated with the disease) associated with NEC from a historical perspective
  • Surgical outcomes of NEC and the role length of intestine plays in those outcomes
  • Her serendipitous discovery, and continuous research, of a growth factor (HB-EGF) that can play a role in protecting babies from NEC
  • Her current research of stem cells and tissue engineered intestine in prevention and treatment of NEC
  • The importance, and inherent challenges, of funding research in NEC.

Episode 1 will be available to listen to, or download, on Saturday, March 28, 2015 at noon EDT at: www.morgansfund.org/speaking-of-nec-episode-1

This episode was produced in part by the TeacherCast Educational Broadcasting Network. For more information about Speaking of NEC or The Morgan Leary Vaughan Fund, visit our website at www.morgansfund.org.

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About The Morgan Leary Vaughan Fund, Inc.

The Morgan Leary Vaughan Fund (Morgan’s Fund) is an all-volunteer, public charity dedicated to Necrotizing Enterocolitis (NEC). Its mission is to promote public awareness about NEC and the potentially devastating effects it can have on preemies and their families, and to advance research to prevent, diagnose, treat, and ultimately, cure NEC. Named after Morgan, it celebrates his survival, courage and strength.

Morgan and his twin brother were born at 28 weeks, one day gestation — nearly three months early — each weighing less than 2.5 pounds. At four days old, Morgan developed NEC and lost approximately 20% of his small intestine. Morgan not only survived but has also thrived since his bout with NEC. This is his family’s way of paying it forward.

About The Petit Family Foundation

The Petit Family Foundation honors the memories of Jennifer Hawke-Petit, Hayley Elizabeth Petit and Michaela Rose Petit by continuing the kindness, idealism and activism that defined their lives. The Foundation’s funds are given to foster the education of young people, especially women in the sciences; to improve the lives of those affected by chronic illnesses; and to support efforts to protect and help those affected by violence.

About Nationwide Children’s Hospital 

Ranked 7th of only 10 children’s hospitals on U.S. News & World Report’s 2014-15 “America’s Best Children’s Hospitals Honor Roll” and among the Top 10 on Parents magazine’s 2013 “Best Children’s Hospitals” list, Nationwide Children’s Hospital is one of the nation’s largest not-for-profit freestanding pediatric healthcare networks providing care for infants, children and adolescents as well as adult patients with congenital disease. As home to the Department of Pediatrics of The Ohio State University College of Medicine, Nationwide Children’s faculty train the next generation of pediatricians, scientists and pediatric specialists. The Research Institute at Nationwide Children’s Hospital is one of the Top 10 National Institutes of Health-funded free-standing pediatric research facilities in the U.S., supporting basic, clinical, translational and health services research at Nationwide Children’s. The Research Institute encompasses three research facilities totaling 525,000 square feet dedicated to research. More information is available at NationwideChildrens.org/Research.

PETIT FAMILY FOUNDATION AWARDS GRANT TO MORGAN’S FUND FOR EDUCATIONAL INITIATIVE FOCUSING ON NECROTIZING ENTEROCOLITITS (NEC)

Dr. William Petit, Jr. of the Petit Family Foundation awards a Grant check to Morgan’s Fund Co-founder and President Stephanie Vaughan. Photo courtesy of the Petit Family Foundation.

Pictured: Dr. William Petit, Jr. of the Petit Family Foundation awards a Grant check to Morgan’s Fund Co-founder and President Stephanie Vaughan. Photo courtesy of the Petit Family Foundation.

(MILFORD, Connecticut)—January 22, 2015—The Petit Family Foundation recently awarded a $6,337.88 grant to The Morgan Leary Vaughan Fund (Morgan’s Fund) to produce its first educational initiative—a free, audio podcast series about Necrotizing Enterocolitits (NEC).

NEC is an 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 10th leading cause of infant death overall. In the United States alone, NEC occurs in approximately 25,000 babies per year. All newborn infants born preterm or born with a low birth weight (less than 5.5 pounds) are at increased risk for NEC.

Produced by The Morgan Leary Vaughan Fund, and funded by The Petit Family Foundation, these podcasts will be one-on-one conversations with relevant NEC experts—neonatologists, clinicians and researchers—that highlight current prevention, diagnosis, and treatment strategies for NEC, and the search for a cure.

“With this generous grant, The Petit Family Foundation has demonstrated their core values of kindness, idealism and activism by recognizing a newly-awarded 501(c)(3) public charity dedicated to a little-known rare disease and funding our cornerstone educational initiative” said Morgan’s Fund Co-founder and President Stephanie Vaughan.

For more information, visit www.morgansfund.org or connect with Morgan’s Fund on Facebook at facebook.com/morgansfundorg and Twitter at twitter.com/morgansfundorg

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About The Morgan Leary Vaughan Fund, Inc.

The Morgan Leary Vaughan Fund (Morgan’s Fund) is an all-volunteer, public charity dedicated to Necrotizing Enterocolitis (NEC). Its mission is to promote public awareness about NEC and the potentially devastating effects it can have on preemies and their families, and to advance research to prevent, diagnose, treat, and ultimately, cure NEC. Named after Morgan, it celebrates his survival, courage and strength.

Morgan and his twin brother were born at 28 weeks, one day gestation—nearly three months early—each weighing less than 2.5 pounds. At four days old, Morgan developed NEC and lost approximately 20% of his small intestine. Morgan not only survived but has also thrived since his bout with NEC. This is his family’s way of paying it forward.

About The Petit Family Foundation

The Petit Family Foundation honors the memories of Jennifer Hawke-Petit, Hayley Elizabeth Petit and Michaela Rose Petit by continuing the kindness, idealism and activism that defined their lives. The Foundation’s funds are given to foster the education of young people, especially women in the sciences; to improve the lives of those affected by chronic illnesses; and to support efforts to protect and help those affected by violence.

IRS AWARDS 501(C)(3) STATUS TO THE MORGAN LEARY VAUGHAN FUND, INC.

First public charity dedicated to Necrotizing Enterocolitis (NEC) receives its official status

(MILFORD, Connecticut)—July 7, 2014—The Morgan Leary Vaughan Fund, Inc. (Morgan’s Fund), a public charity dedicated to Necrotizing Enterocolitis (NEC), is proud to announce that it has been awarded tax exempt status under Section 501(c)(3) of the United States Internal Revenue Code. All donations made to Morgan’s Fund are tax deductible up to the limits allowable under the law, including retroactive donations to the founding of the charity on February 14, 2012.

“The Morgan Leary Vaughan Fund, Inc. is solely dedicated Necrotizing Enterocolitis, an inflammatory disease predominately of prematurity that leads to necrosis (death) of the intestine,” said Co-founder and President Stephanie Vaughan. “Being awarded 501(c)(3) public charity status means that we can accelerate many of Morgan’s Fund’s initiatives in support of our mission to promote public awareness about NEC and to advance research in NEC and its prevention, diagnosis, treatment, and ultimately, its cure.”

“We want to thank everyone who has already demonstrated their support of our mission with a voluntary financial contribution,” added Ms. Vaughan. “We are so pleased to be able to offer a tax receipt to all of our donors and supporters.”

Donations can be made online at www.morgansfund.orgRequests for information about sponsorships and corporate partnerships should be sent to hello@morgansfund.org.

For more information or to request an interview, please contact press@morgansfund.org.

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About The Morgan Leary Vaughan Fund, Inc.

The Morgan Leary Vaughan Fund is an all-volunteer, public charity dedicated to Necrotizing Enterocolitis (NEC). Its mission is to promote public awareness about NEC and the potentially devastating effects it can have on preemies and their families, and to advance research to prevent, diagnose, treat, and ultimately, cure NEC. Named after Morgan, it celebrates his survival, courage and strength.

Morgan and his twin brother were born at 28 weeks, one day gestation—nearly three months early—each weighing less than 2.5 pounds. At four days old, Morgan developed NEC and lost approximately 20% of his small intestine. Morgan not only survived but has also thrived since his bout with NEC. This is his family’s way of paying it forward.

About Necrotizing Enterocolitis (NEC)

NEC is an inflammatory disease that leads to necrosis (death) of the intestine. Predominately a disease of prematurity, its statistics are startling:

  • NEC is the second leading cause of death in premature infants.
  • NEC is the 10th leading cause of infant death overall.
  • 15 to 40% of infants with NEC die from the disease.
  • 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.
  • Despite extensive study, the cause of NEC is uncertain.