PreemieCare News/Press Releases

Wednesday, January 28, 2009

Contact: Annette Eyer

(717) 433-7109

aeyer@cullarigroup.com

New York Network Creates Unified Voice for Prematurity Challenges

ALBANY- (January 28, 2009) – In an average week, 4,738 babies are born in the state of New York.  Five hundred seventy-five of those babies (12%) are born premature.  New York currently ranks 19th in the United States for the number of premature births each year.  Premature infants face a number of challenges including increased risk of developmental problems, nutrition challenges, infection risk, vision and hearing impairment and chronic respiratory diseases. In addition, it is equally important to raise awareness of the sometimes life-long consequences for children born prematurely and the challenges their parents face trying to secure and afford essential health and support services for their newborns 

 

New York families are fortunate to live in a state that has historically been committed to the health and education of its children. Unlike many other states, New York has valuable statewide programs available for families to help ensure our children’s safety, growth and development. Members of the New York State Legislature have played a vital role in keeping our precious children a priority, in particular the most vulnerable at risk infants.

 

“Prematurity is a problem that can affect everyone, people living in suburban and/or urban regions. As it continues to rise, so do the consequences of prematurity – increased cost-of-care, increased infant mortality, and increased disability, both physical and mental,” stated Sergio G. Golombek, MD, MPH, FAAP, Associate Professor of Pediatrics and Clinical Public Health New York Medical College Attending Neonatologist Regional Neonatal Center-Maria Fareri Children's Hospital. “Prematurity is something that needs to pull resources and efforts from everyone in the community. Not only is this an issue for physicians, nurses and healthcare workers, but it also requires attention from politicians and families. Together we need to address some of the few clear factors that can cause preterm birth, such as poor prenatal care and substance abuse.”

 

The New York Premature Infant Health Network was established to help create a statewide unified voice to articulate the many unique challenges premature infants face once they leave the hospital and care begins at home. The Network also seeks to advocate for access to essential services for all babies and their families no matter where they reside in the state.   The Network membership includes representatives from nearly 60 community and health organizations, faith-based groups, healthcare providers and parents from across the state.

“One of the biggest challenges caregivers and families face in New York is the continuum of care from the NICU to the community. The Network will dedicate efforts to increase communication and education to medical professionals, policy makers and communities of available services and programs for families affected by prematurity.  Additionally we hope to centralize expertise to create a statewide advocate for the tiniest New Yorkers who need each of us to be their voice,” said Maureen Doolan Boyle, Executive Director, Mothers of Supertwins,(MOST) and Chair of PreemieCare.

“As New York, like the rest of the nation, strives to address current fiscal issues, it is important that we are not short-sighted in cutting programs and services, especially those for our most vulnerable infants and children, that will place a greater burden on families and NYS in the long run,” commented Sharon Chesna, Director, Mothers & Babies Perinatal Network.

The New York Premature Infant Health Network holds regular meetings in Albany and New York City and schedules additional member communication through periodic statewide conference calls.  If you would like more information on the New York Premature Infant Health Network, contact Annette Eyer, Network Coordinator (Consultant), at aeyer@cullarigroup.com or (717) 433-7109. The New York Premature Infant Health Network is supported and funded by MedImmune, LLC, which provides administrative and operational direction through its consultant, Cullari Communications Group.

 

Several members of the New York Premature Infant Health Network include: Blythedale Children's Hospital; BirthNet; Central Harlem Healthy Start Program; Centro Civico of Amsterdam, Inc; Long Island University/ Brooklyn Campus; Lower Hudson Valley Perinatal Network; Mothers & Babies Perinatal Network of SCNY, Inc; MOST; New York State Academy of Family Physicians; New York City Association of Neonatal Nurses; New York City Department of Health and Mental Hygiene- Brooklyn Healthy Start Project. North Country Prenatal/Perinatal Council; The Regional Neonatal Center-Maria Fareri Children's Hospital; Northern Manhattan Perinatal Partnership, and PreemieCare.

 

National Center for Health Statistics, final natality date. Retrieved September 18, 2008 from www.marchofdimes.com/peristats.

Child Trends analysis of 1990-2005 Natality Data Set CD Series 21, numbers 2-9, 11-12, 14-16 (SETS versions), and 16H and 17Ha (ASCII version), National Center for Health Statistics.  http://www.kidscount.org/.

 

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Wednesday, November 5, 2008.  PreemieCare, daughter organization of non-profit Mothers of Supertwins, Inc. (MOST) is pleased to announce the appointment of Deb Discenza as Assistant Chairperson of PreemieCare.   Ms. Discenza brings to the organization and the position her expertise and skills in connecting with the community of parents of premature babies and the professionals that serve this population.

 

“We are thrilled that Deb has joined our team and privileged to have someone with her level of expertise and experience within the Preemie community,” states Maureen Doolan Boyle, Chairperson of PreemieCare. “With the increased number of preterm deliveries across the U.S., supporting families of infants born preterm is of the utmost importance to local and national organizations not only while the baby is in the NICU but also as they grow. Prematurity impacts the family emotionally and financially for years to come.  Support and resources are imperative and thankfully Deb Discenza brings both with her to this position.”

 

As the former Founder and Publisher of Preemie Magazine, a national parenting publication, Ms. Discenza is well-suited to working within this non-profit venue.  “I see PreemieCare as a continuation of the work I have done helping families as well as professionals on both the for-profit and non-profit levels.  Yet it also takes that support to a much higher level with our current set-up and our future plans.”

 

PreemieCare’s website (www.PreemieCare.org) is a clearinghouse of resources for families as well as a wealth of information.  Currently the project is connecting with support groups worldwide to create a definitive list to connect families on a global level. Alternatively, the site is also creating an online community for support group leaders to connect and discuss best practices in order to help each one thrive long-term.  Future plans will include a regular e-newsletter, additional website resources for families and professionals and more.

 

“There is a myth that preemie parents only need support for the NICU days and while that is totally the case it is not the entire story, “Discenza comments. “Leaving the NICU is a huge challenge and for many years afterward the families find that time and again they are struggling and need to reach out to others who understand what they have and are going through and at the same time can be there for the newer families as well.  What we are doing is creating a community that will help these families not only in the NICU but also long-term.”

 

PreemieCare (www.PreemieCare.org) is a non-profit organization dedicated to supporting families of infants born preterm through education, support, and resources and also acts as a mentoring and networking organization for hospital and community-based parent-of-preemie support groups. It is the daughter organization of Mothers of Supertwins (www.MOSTOnline.org) a non-profit parenting organization that provides information, education, support and additional resources for families of multiples.

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January 30, 2007 PreemieCare and CarePages team up! On January 31, 2007, NBC-5 in Chicago will feature a segment on one new mother of a 28 week surviving twin and how CarePages is helping her build an online support community. The segment will include information on how to support PreemieCare.

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PreemieCare
P.O. Box 306
(631) 859-1110
East Islip, NY 11730
info@preemiecare.org