The Family Advisory Council seeks to:
The Council includes NFI Board appointed individuals who have had a prematurely born or ill newborn in their family (i.e. child, grandchild) and individuals who represent parent organizations around the world
The Council is overseen by the NFI Advancement Committee
The Co-Chairs act as liaisons between the Council and the Advancement Committee
Mandy Daly, Dip. H Diet & Nutrition, Dip. Ki Massage, ACII, DLDU, is a parent of a preterm infant born in 2006 and is one of the founding members and the Director of Advocacy and Policy Making in the Irish Neonatal Health Alliance. Mandy sits on the Parents Advisory Board of the European Foundation for the Care of Newborn Infants (EFCNI) and is a member of the NFI Board of Directors. Mandy is a regular contributor to the NIDCAP Blog where she has shared the story of her daughter’s premature birth. Mandy currently resides in Ireland with her family.
Samantha Butler, PhD is a mother of twin boys, Elliot and Nathaniel, born late preterm and now thriving in first grade. She is a developmental and clinical psychologist at Boston Children’s Hospital (BCH) and an Assistant Professor at Harvard Medical School, Boston, Massachusetts, USA. She is a NIDCAP Professional, a member of the NFI and a contributor to the NIDCAP Blog. At BCH she is a member of Dr. Heidelise Als’ research team in Neurobehavioral Infant and Child Studies Laboratory. She is also a member of the Cardiac Neurodevelopmental Program at BCH where she provides education on NIDCAP Care and is the inpatient attending psychologist in Cardiology. , Dr. Butler is also a member of the Cardiac Neurodevelopmental Outcome Collaborative. . Samantha currently resides in Boston, USA with her family.
Jennifer Degl, MS is the mother of four, including a daughter born at 23 weeks. She is also the author of From Hope to Joy: A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds, and a writer for Huffington Post Parents and The Mighty. Jennifer currently resides in New York, USA with her family.
Deb Discenza, MA is the mother of Becky born at 30 weeks gestational age. She is also the founder and former Publisher of Preemieworld, co-author of The Preemie Parent’s Survival Guide to the NICU and she has a tenure with the award-winning Preemie Magazine. She is the founding member and steering committee member of the National Premature Infant Health Coalition and a founding member and Leadership team member of the Preemie Parent Alliance. She is a regular Column Editor for the Neonatal Network’s Neonatal Network Journal, and a columnist for both the quarterly newsletter for the Council of International Neonatal Nurses (COINN) and for Neonatal Intensive Care magazine. Deb received an award from the National Perinatal Association for her work in supporting families during the NICU journey. Ms. Discenza is also a contributor to the NIDCAP Blog. She currently resides in Washington DC, USA with her family
Yamile Jackson, PhD, PE, PMP, is the mother of four children, including Zachary who was born prematurely at 28 weeks. Her son is the inspiration behind the development of the Nurturing Technology (TM) from Nurtured by Design(R) [The Zaky(TM) and Kangaroo Zak(R)]. Yamile has a PhD in ergonomics and human factors engineering, is a licensed Professional Engineer in Texas, and holds certifications as a Project Management Professional and as Professional Kangaroo Caregiver. Zachary is in high school, learning to drive, and is Nurtured by Design’s CIO (Chief inspirational officer). Yamile currently lives in Houston, Texas, USA with her family.
Livia Nagy Bonnard
Livia Nagy Bonnard
Lívia Nagy Bonnard is a founding member of Melletted a helyem Egyesület (Right Beside You) in Hungary. The Association brings together doctors, medical professionals, policy makers, NGOs and the parents of preterm children in order to improve the quality of care. Though born in Hungary, she now lives on the French Swiss border, so she has a deep insight into the NICU and Follow-up system in Hungary, France and Switzerland. Livia is the mother of four children, three daughters and a fifteen year old son who was born early at 27 weeks and suffered from Periventricular Leukomalacia (PVL) and lives with neurocognitive challenges. Livia is a trained nurse and worked mostly with babies and children in cardiac departments and a CICU (cardiac intensive care unit).
In 2017, she and her organization “Right Beside You” received an EFCNI award for outstanding efforts and dedication in the field of newborn health. She was featured and contributed to a 2018 joint report by World Health Organization and UNICEF titled ‘Survive & Thrive: Transforming care for every small and sick baby’. She has been a member of the Parent Advisory Board of EFCNI since 2015 and an EUPATI patient expert. Livia is a chair committee member of the group that developed the European Standards of Care For Newborn Health and has successfully advocated for neurodevelopental care in Hungary since 2016. She has collaborated with Inga Warren and participated as parent expert at the FINE Levels 1 and 2 training under the “Family Centered Obstetrics Grant Program” in all participating Hungarian NICUs.
Nina Nikolova, BS is the happy mother of twins born premature at 29 weeks, Martin and Joana. She is chairwoman and a Co-Founder of the Bulgarian Foundation “Our premature children”, the first Bulgarian non-profit organization which supports premature babies and their families. She founded the organization following the difficult birth and loss of twins. She shared her emotional journey on the NIDCAP Blog. Nina currently resides in Sofia, Bulgaria with her family
Marni Panas, BS is a proud parent to two special boys, Alex & Andrew. It was her sons’ birth at 24 weeks gestation, five months of experiences in the Neonatal Intensive Care Unit (NICU) that followed and the passing of Andrew that introduced Marni to the world of health care, Patient & Family Centred Care and NIDCAP. She served as one of the first Co-Chairs of the Stollery Children’s Hospital, Canada, Family Centred Care Council and as the Coordinator of Family Centred Care. She is currently a Senior Employee Relations Advisor with Alberta Health Services, family and staff participant on the Stollery Children’s Hospital NIDCAP working group, and an active member of the NFI. Marni is also an engaged member of her community where she received the Human Rights award from the John Humphrey Centre for Peace and Human Rights, has recently been nominated as an Edmonton YWCA Woman of Distinction and named a Camrose Composite High School Alumnus of Distinction for her commitment to creating a community where diversity is not only accepted, but celebrated. Marni currently lives in Alberta, Canada with her family.
Debra Paul, OTR/L, NIDCAP Professional, is the proud parent of twins who were born late preterm. One of her twins has graduated from college and the other twin is set to graduate from college this coming winter. She is also an occupational therapist and the Quality & Safety/Clinical Effectiveness Program Coordinator for the Division of Occupational and Physical Therapy at Children’s Hospital Colorado. She is also a NIDCAP Professional and practices in the neonatal intensive care unit (NICU) at Children’s Hospital. Debra is an active member of the NFI. Debra lives in Colorado, USA with her family.
Asta Radzeviciene, MBA is the mother to Margarita born preterm at 26 weeks. She is also the Founder and President of the Lithuanian Premature baby association, NEISNESIOTUKAS, an international organization in conjunction with the EFCNI and creator of “Fairy of Hope”. Asta lives in Vilnius, Lithuania with her family
Keira Levit Sorrells
Keira Levit Sorrells
Keira Levit Sorrells, BSFACS is the mother of triplets, Avery, Lily, and Zoe, born at 25 weeks. Avery and Lily spent four months in the NICU and Zoe was there for 9.5 months. After coming home, Zoe was rehospitalized at 14 months and died suddenly from a secondary infection. As a result of those experiences, Keira founded the Zoe Rose Memorial Foundation which offers support to parents of premature infants and those who have lost an infant; as well as the Preemie Parent Alliance (PPA), where she now serves as President. PPA is a national network of 33 NICU parent support organizations that collaborate to share best practices and work together, with professional provider associations to improve support for NICU families. She also serves on steering committees for the National Coalition for Infant Health, the Mississippi Perinatal Quality Collaborative and the National Network of Perinatal Quality Collaboratives. Keira resides in Mississippi, USA with her family
Lelis Vernon, BA is mother of a premature infant born at 25 weeks. She is the first volunteer NICU parent to work with the NICU team at Baptist Children’s Hospital, Miami, Florida and since then she has worked to create, grow, and coordinate all activities of the Parent Advisory Council (PAC). She is on the Clinical Guidelines Committee as a Public Member at American College of Physicians. She actively participates and collaborates in specific study groups and unit committees of the NICU (Baptist Children’s NICU FCC Committee, Vermont Oxford Network Team, QI teams). She is an active member of the NFI. Lelis lives in Florida, USA with her family.
Contact the Family Advisory Council Co-Chairs for more information:
Mandy Daly, email@example.com
Samantha Butler, firstname.lastname@example.org
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