Morgan's Fund Issues Statement on Selection for NORD's Natural History Studies Project
A statement was issued today 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.
Milford, CT, April 22, 2016 --(PR.com)-- 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 The Morgan Leary Vaughan 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
About The Morgan Leary Vaughan Fund, Inc.
The Morgan Leary Vaughan Fund (Morgan's Fund) www.morgansfund.org 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.
"On behalf of The Morgan Leary Vaughan 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
About The Morgan Leary Vaughan Fund, Inc.
The Morgan Leary Vaughan Fund (Morgan's Fund) www.morgansfund.org 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.
Contact
The Morgan Leary Vaughan Fund, Inc.
Stephanie M. Vaughan
203-606-4873
www.morgansfund.org
Stephanie M. Vaughan
203-606-4873
www.morgansfund.org
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