The inaugural Speaking of NEC: Unplugged was held on June 11, 2018 at the
Courtyard by Marriott in Cromwell, Connecticut and it was very well
received. This one-day regional conference that focused on identifying
practical solutions for reducing the devastating effects of Necrotizing enterocolitis (NEC) on premature infants and their families, was presented
by The Morgan Leary Vaughan Fund (Morgan’s Fund). The event drew more
than 100 participants from the Northeast and beyond.
NEC is a rare, inflammatory disease that leads to necrosis (death) of the
intestine and it affects about 9,000 of the 480,000 infants born preterm
each year in the United States. Although all newborn infants born
preterm or born with a low birth weight (less than 5.5 pounds) are at
increased risk for NEC, very low birthweight babies are at an even
greater risk for developing this deadly disease.
Speaking of NEC: Unplugged was designed to bring together relevant
NEC experts with preemie parent influencers and advocates so that all
stakeholder groups could leave the conference with new information
and renewed drive to continue looking for better treatments for NEC
and ways to implement those we already know prevent NEC. This was
most certainly accomplished.
The education objectives were designed so that the attendees would be
able to discuss challenges that health care workers face when caring for
an infant with NEC, discuss the epidemiology of NEC and initial findings
of the Natural History Registry for Necrotizing Enterocolitis (NEC
Registry), learn about the benefits of using an exclusive human milk diet,
discuss current healthcare and policy issues related to the use of donor human milk and human milk-based fortifiers, discuss the traumatic
impact regarding the diagnosis of NEC on families, and discuss the long-
term impact of NEC on neurodevelopmental outcomes. Connecticut
Children’s Medical Center offered 4.5 CME credits to those who
attended the full day of speakers.
The event hosted more than 20 distinguished speakers including
neonatologists, clinicians, and researchers from Connecticut Children’s
Medical Center, Maria Fareri Children’s Hospital at Westchester Medical
Center, 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.
Attendees included physicians, parent advocates and nurses from thirteen
hospitals and ten states.
The speakers had the audience engaged at all times, many of whom
naturally couldn’t help being overcome with emotion when parents
shared some of their personal NEC stories. When preemie parents
speak, it’s impossible not to feel their pain and rejoice in their triumphs.
These stories help drive research, build momentum between doctors
and researchers — encouraging them to be relentless in their ongoing
quest to find better ways to treat NEC and ultimately prevent it from
Dr. William Petit, former physician and current Connecticut Representative
of the 22nd General Assembly District, honored us by dropping in to say a
few words about why The Petit Family Foundation proudly supports the
work that Morgan’s Fund is doing and why they are happy to provide
funding for their research and events such as this!
The Morgan Leary Vaughan Fund plans to host an additional conference of this nature in the late winter of 2019 in Austin, Texas.
Leveraging the outcomes of the Speaking of NEC: Unplugged conference,
Morgan’s Fund will continue to empower and educate parents, providers,
researchers, policy makers, and the public about NEC. Research continues
in the face of an ever-widening conclusive body of evidence that NICUs
throughout the nation should enhance lactation services to help mothers with breastfeeding, provide human donor milk as a bridge to help these
mothers, and educate parents about the reasons why an exclusive human
milk diet is critical and why cow-based formulas and fortifiers are
The Morgan Leary Vaughan Fund urges all parents to understand their
nutritional options and to advocate for low birth weight and premature
babies (especially those born under 2.2 pounds) to receive only breastmilk,
human donor milk and human milk-based fortifiers. While we continue to
search for other ways to prevent NEC, in this way alone we can reduce NEC
rates by as much as 70%.
You can read the press release on the event by clicking HERE.
Many organizations from the Preemie Parent Alliance had members to
represent them at the event, including Speaking for Moms and Babies, Inc.,
Once Upon a Preemie, NICU Helping Hands, The Tiny Miracles Foundation,
and Nurtured by Design.
Events photos were taken by Le Petit Studio of Connecticut.
Stay tuned for the release of our video recordings and short clips on NEC, recorded throughout the conference. We are excited to share them once they are complete!
The Morgan Leary Vaughan Fund (Morgan’s Fund) is a 501(c)(3) public
charity dedicated to NEC. It was started by Stephanie and Jeffery Vaughan, after one of their premature twins (Morgan) was diagnosed with NEC shortly after birth.
Morgan’s Fund produced a podcast series on
Necrotizing Enterocolitis, called “Speaking of NEC”. You can listen to them
on iTunes or download them from this link:
Morgan’s Fund has also partnered with the National Organization of Rare Disorders to create a first of its kind natural history registry where those affected by NEC can enroll to help further the research into both the causes of NEC and what NEC patients may face as they grow. You can find more information on the NEC Registry by clinking here: https://www.necregistry.org/.
For more information on Necrotizing Enterocolitis and The Morgan Leary Vaughan Fund, please visit http://www.morgansfund.org/
See below for some more photos of the event: