Appearances & Press
Deb Discenza is a seasoned speaker to both parenting and professional audiences about a wide range of topics relating to parenting a preemie. She has given talks on everything from surviving the NICU, to navigating the school years, to addressing difficult parent advocacy issues.
Below, you can browse recent press releases, news coverage, and upcoming engagements with PreemieWorld.
If you are interested in having Deb speak at your event, please contact us.
Press Releases
PreemieWorld Announces its Newest Premium Partner – Crystal Ball Health, LLC
September 7, 2019, WASHINGTON, DC. PreemieWorld is excited to announce its latest premium partner, Crystal Ball Health, LLC the entity in charge of the forthcoming Preemie Crystal Ball project.
“PreemieWorld sees a large void in this community,” comments Deb Discenza, “Specifically one around outcomes data and its use to increase research from preemie pregnancies to birth, to NICU to home and on up through the geriatric years. There is just so much we don’t know because the current research has such a small sample size, averaging in the hundreds versus the 16 million premature babies born globally each year. We have to do better.”
“I talk to former “preemies” all of the time, ones that are now in their 20s, 30s, 40s and older. As the pioneers in the explosion of neonatal medicine, they have had various struggles in life and this should be a wake-up call to the field of neonatology, especially as we save babies earlier and earlier, now at 22 weeks gestation. We have to do our due diligence, we have to do right by these patients not just for the short-term but also the long-term. Not doing so can have devastating effects on the patient, the family and society overall.”
Deb Discenza is the Founder, CEO and Publisher of PreemieWorld, LLC, an educational products and research company. She is the co-author of The Preemie Parent’s Survival Guide to the NICU and the Publisher of two newsletters Preemie Family for parents and Preemie Pro for professionals.
Crystal Ball Health, LLC (www.CrystalBallHealth.com) is devoted to creating better healthcare outcomes for patients. Its first project is Preemie Crystal Ball, focused on increasing data in the preemie community to improve short-term and long-term outcomes in premature babies as they are born and grow older.
PreePreemieWorld, LLC & Parenting Special Needs Magazine Announce Strategic Partnership
August 15, 2019, WASHINGTON, DC. PreemieWorld, LLC, and Parenting Special Needs Magazine are pleased to announce their strategic partnership.
Deb Discenza, Founder, CEO/Publisher of PreemieWorld, LLC, says, “This partnership highlights the ongoing challenges that exist in the preemie community and all communities with health conditions and more. We need the uplift that Parenting Special Needs Magazine has to share through resources, ideas and foster a tightly-knit community advocating for change across many areas of healthcare, therapeutics, education and transitioning into adulthood.”
Discenza continues, “The reality is that with better diagnostics and better awareness, the special needs sector has seen a pattern of growth. We need to do better by these children so they can grow up and thrive in whatever way possible.”
Chantai Snellgrove, Founder and Publisher of Parenting Special Needs Magazine agrees, commenting, “I believe in the ‘power of parenting’ and that by equipping and empowering parents with better information, tools, and resources, we can change, motivate, and improve not only our children’s lives, but our lives as well.”
Deb Discenza is the Founder, CEO and Publisher of PreemieWorld, LLC (www.PreemieWorld.com), an educational products and research company and the parent to a special needs child. She is the co-author of The Preemie Parent’s Survival Guide to the NICU and the Publisher of two newsletters PreemieFAMILY for parents and PreemiePRO for professionals. The PreemieWorld website has a wealth of information and resources for both parents and professionals in the global preemie community.
Chantai Snellgrove is the Founder and Publisher of Parenting Special Needs Magazine (www.parentingspecialneeds.org) as well as the parent of a child with special needs. The Parenting Special Needs Magazine and Parenting Special Needs website are resources that help guide parents raising a child with special needs by providing insights, strategies, and support. We also share wisdom from others’ life lessons in order to tackle the challenges and celebrate the joys of raising a child with special needs.
PreemieWorld, LLC & Council of International Neonatal Nurses Announce Strategic Partnership
August 1, 2019, WASHINGTON, DC. PreemieWorld, LLC and Council of International Neonatal Nurses are pleased to announce their strategic partnership.
Notes Deb Discenza, Founder, CEO/Publisher of PreemieWorld, LLC, “It is an honor to partner with the Council of International Neonatal Nurses (COINN). We are aligned in our goal to improve care for the tiniest and sickest of babies globally with the goal of improving long-term outcomes.”
Carole Kenner, CEO of the Council of International Neonatal Nurses (COINN) comments, “We are excited and honored to partner with PreemieWorld, LLC and its founder Deb Discenza. Parents as partners are critical to our work as neonatal nurses weather that work is practice, education, or research. We truly believe they are part of the healthcare team and contribute so much to our understanding of their baby.”
Deb Discenza is the Founder, CEO and Publisher of PreemieWorld, LLC (www.PreemieWorld.com), an educational products and research company and the parent to a special needs child. She is the co-author of The Preemie Parent’s Survival Guide to the NICU and the Publisher of two newsletters PreemieFAMILY for parents and PreemiePRO for professionals. The PreemieWorld website has a wealth of information and resources for both parents and professionals in the global preemie community.
Carole Kenner, PHD, RN, FAAN, FNAP, ANEF, is the CEO of the Council of International Neonatal Nurses (www.coinnurses.org) and has over 35 years’ neonatal/perinatal/pediatric experience. She is a graduate of the University of Cincinnati and Indiana University (USA) with the degrees in neonatal/perinatal nursing and nursing education. She has taught for 30 years, developed educational programs in the US and abroad. She is the author/editor over 30 textbooks and a four-time winner of publishing awards including the American Journal of Nursing Book of the Year. She received the Audrey Hepburn Award from Sigma Theta Tau for her international contributions to child welfare and the National Association of Neonatal Nurses (NANN) Lifetime Achievement Award. Carole is the Dean of the School of Nursing, Health, and Exercise Science at The College of New Jersey (USA) at present. She was the founding President of COINN.
Council of International Neonatal Nurses (www.coinnurses.org) or COINN is an exciting organization that represents nurses who specialize in the care of newborn infants and their families or have a special interest in this area of nursing. COINN, pronounced just like the money-currency or a coin – acts much like money as a method of exchange of information among countries. COINN is part of the growing international community of nurses that represents a resource for nurses that want to form a national or local organization, create guidelines for care or professional standards or just want advice on neonatal nursing issues.
PreemieWorld, LLC & Genetic Alliance Collaborate on Article for Neonatology Today
March 1, 2019, Washington, DC. Deb Discenza, PreemieWorld, LLC’s Founder and CEO, and Andrea Goodman, Genetic Alliance and Expecting Health’s Director of Engagement, have collaborated on an article published in the latest edition of Neonatology Today regarding the importance of patient registries.
Both Goodman and Discenza champion the value in-patient registries, specifically in the maternal and neonatal spaces. Notes Goodman, “Registries are becoming more and more valuable as we’re evolving to a healthcare landscape with patient-reported data. But we need true culture change. If we start by listening to and trusting patients, parents, and other stakeholders, we’ll get all the information we need about preferences and needs, directly from those most impacted.”
Discenza agrees, commenting, “The current studies in the preemie community have small sample sizes that do not live up to the conclusions being discovered. Always the same conclusion is met with, ‘More research is needed.’ We also need to broaden the research spectrum from only newborns and toddlers but also focus on the lifespan as a whole. The big picture is needed and again with a larger sample size involved. Only then can we truly create a real platform for discussion and change in care, medicine, and advocacy.”
The March edition of Neonatology Today can be downloaded at: http://www.neonatologytoday.net/newsletters/nt-mar19.pdf
Deb Discenza is the Founder, CEO and Publisher of PreemieWorld, LLC, an educational products and research company. She is the co-author of The Preemie Parent’s Survival Guide to the NICU and the Publisher of two newsletters Preemie Family for parents and Preemie Pro for professionals.
Andrea Goodman, MSW, MPH, is a leader in scaling maternal and child health programs and most passionate about finding solutions that meet families where they are. She serves on the Steering Committee of the National Coalition for Infant Health, as Senior Editorial Project Director for Neonatology Today, and as Director of Engagement for Expecting Health and Genetic Alliance, an organization with 32 plus years of experience serving the disease advocacy community through a people-centered lens. Genetic Alliance created the Platform for Engaging Everyone Responsibly (PEER), a unique solution for collecting health data directly from individuals and accommodates a variety of attitudes about data sharing and privacy.
NEONATOLOGY TODAY is the only peer-reviewed monthly newsletter available free to Neonatologists, Perinatologists, Neonatal Nurses, Neonatal Respiratory Care Specialists, Parents and anyone interested in the Neonatal Perinatal space. It aims to provide timely news and information to Neonatologists and Perinatologists regarding the care of newborns and the diagnosis and treatment of premature and/or sick infants.