Parent Advisory Board
Mandy Daly is a parent of a preterm infant and is Director of Advocacy and Policy Making with the charity the Irish Neonatal Health Alliance. Since 2006, she has been advocating for families of preterm infants and was instrumental in the formation of the collaborative platform in Ireland that resulted in the production of Ireland’s inaugural benchmarking report on prematurity, the implementation of a 24 hour Neonatal Transport Service and the publication of Ireland’s first ever National Neonatal Guidelines.
Mandy works alongside international parent organisations, healthcare professionals, educators, industry partners, government officials and researchers and is involved on several Irish and international research studies as patient advocate. She represents the parent voice on the board of the NIDCAP Federation International. She oversees neonatal curriculum reviews, lectures to students entering the field of neonatology, is a regular speaker at national and international medical conferences and is active in several system review projects i.e. transport, primary eye-care services and the role of Advanced Nurse Practitioners in the paediatric retrieval process.
Paula Guerra is one of the founders of the Portuguese preemies association XXS – Associação Portuguesa de Apoio ao Bebé Prematuro, being a board member of XXS since the creation of the association in November 2008. She has two daughters, one born in 1993 as a term baby and a second one, an extremely premature girl, born in 2001 with 26 weeks of gestation and 615g of weight.
Since 1993, Paula worked in IT development departments of three different Portuguese banks and she now coordinates the IT Talent Management Department in one of those Portuguese banks.
Paula has been representing XXS within EFCNI since the first joint Parent Organisations Meeting taking place in 2008, when XXS had only one week of existence.
Dr Tomasz Makaruk is the founder and Chairman of the Polish Premature Baby Foundation (Fundacja Wczesniak Rodzice-Rodzicom), which has existed since 2004, shortly after Tomasz became a father to a preemie born in week 29 at 1600 g.
Tomasz holds a PhD in Economics from the Warsaw School of Economics and also completed a course in Managing Professional Service Firms at Harvard Business School Executive Education. During his work with the Premature Baby Foundation, Tomasz was also the co-creator of a highly successful fundraising campaign for the organisation in 2010.
Over the past 20 years Tomasz has worked in both management and executive positions within the marketing departments of top international corporations. Tomasz also co-owns and manages a marketing firm specialised in building brand loyalty.
Tomasz is an active communicator and in addition to keeping a blog on marketing and economics, he has written a number of articles that have appeared in the press. He speaks Polish, English and Russian.
Livia has been one of the founding members of Right(s) beside you Association. The Association brings together doctors, medical professionals, policy makers, NGOs and the parents of premature children in order to improve the quality of care. She deals mainly with parental support, especially giving advice to parents who have special needs children. Her work has been involved in different forums for parents of special needs children from 2006 onward.
Though born in Hungary, she now lives on the French Swiss border, so she has a deep insight into the NICU system in Hungary, France and Switzerland. She is a mother of 4 children, 3 girls, and a preemie boy who was born at gestational week 27 and who suffered from PVL.
Livia is a trained nurse, she worked mostly with babies and children in cardiac departments and a CICU (cardiac intensive care unit).
Her motivation to join the EFCNI Parent Advisory Board, is to raise her voice for preemie parents, especially from Eastern European Countries. Parents from these countries are facing deep concerns and challenges – being affected by the same EU standards and regulations as parents of preterm babies in other countries.
Gert van Steenbrugge is father of two preterm children, born respectively at 34 and 26 weeks of pregnancy. He is past director of the Dutch parent organisation Vereniging van Ouders van Couveusekinderen (VOC) and represents The Netherlands in EFCNI since the first joint Parent Organisations meeting in 2008.
In 1994, Gert started as volunteer at VOC and was board member and chairman till 2003. From 2003 to 2017, he was director of VOC.
Gert holds a PhD in biochemistry and worked for many years in biomedical research. Having this background, his special interest and activities for the VOC organisation has always been focused at medical advocacy work. In close cooperation with care providers he is involved in aftercare and follow-up programs, was member of several guideline committees, participates in research groups and represents parents in the Call-to-Action NL platform, a local continuation of the EFCNI initiative.
Along with parents and professionals, he was the founder of the Neokeurmerk, a quality mark for the Neonatology and the Mother and Child centres of the Dutch hospitals. This program is based on the parent perspective, with the focus on developmental and family-centred care.
Dr Eleni Vavouraki is a licensed Pulmonologist with a PhD in pulmonary rehabilitation; she is also specialized in Complementary and Alternative Medicine.
After becoming an aunt of triplets, that were born very prematurely (26+4), she together with the triplet’s parents decided to co-found the association Ilitominon, of which she is the President since 2011.
She has a wide teaching experience as a faculty member of the Health and Care Professions Department of the Technological Educational Institute of Athens for 23 years. She is now working as a medical advisor to a company of natural products. At the same time, she participates as a Scientific Collaborator in the Medical School of the University of Thessaly teaching postgraduate courses.
Eleni is also member of the Board of Therapeutic Riding Association of Greece, a NGO for therapeutic riding, where children with disabilities (many of them due to prematurity) are helped to cope, build their self-esteem and improve their physical condition. She is married and mother of two sons and she speaks Greek, English and some French and Spanish.
Chairwoman of the Belgian parents organisation Vlaamse Vereniging voor Ouders van Couveusekinderen(VVOC).
She joined the VVOC in 2007 as an active board member and became Chairwoman in 2013.
She is mother of two children, the oldest born at 30 weeks of gestation.
Yannic is a clinical psychologist, psychoanalytic psychotherapist, Infant Mental Health specialist and works as research assistant at the UPC KU Leuven and as affiliated staff of the Center for Psychoanalysis and Psychodynamic Psychology at the University of Leuven.
She speaks Dutch, French and English. She has been representing Belgium within EFCNI since the first joint parent organizations meeting in 2008. She collaborates closely with EFCNI to improve prevention of preterm birth and for the best possible care for preterm infants and their families in Belgium and Europe.
Mónica is mother of triplets born in 29 weeks of gestation in London, UK. Her babies received NIDCAP attention in 1999 in the Winnicott Neontatal Unit in St. Mary´s Hospital in London.
Mónica has been supporting the association PREMATURA in Spain since 2001, of which she is the current President. She is a clinical Psychologist as well as a trainer in baby massage, infant reflexology, kangaroo mother care. She attended a post-degree-course in prematurity at the Italian Hospital in Argentina. Beyond this, she is a trainer in the HighScope programme for parents and teachers.
In her daily work, she is in contact with issues like: attachment, bonding, kangaroo mother care, baby massage, reflexology, breast-feeding, follow-up, pregnancy, baby body language and stress in mothers, tenets of Brazelton, NIDCAP. She has working experience with parents and families of preterm infants and guided workshops with parents groups.
Mónica is a member of Multiple Births Assoc. UK, Baby Massage Assoc, National Health Ministry Program for Natural Births in Spain, Pro-birth Spanish National Platform, Kargaroo Mother Care, Reflexology Assoc, Winnicott Baby Foundation, EFCNI European Foundation and is in regular contact with hospitals and associations in Spain and other European countries.
Mónica lived in Italy, the United Kingdom, Germany, and Spain.