Parent Advisory Board

Mandy Daly, Parents Advisory Board

Mandy Daly

Ireland

Mandy Daly is a parent of a preterm infant born in 2006 and is Director of Advocacy and Policy Making with the Irish Neonatal Health Alliance. She has been advocating on behalf of families of preterm infants since 2006 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 and the implementation of a 24 hour Neonatal Transport Service. Mandy works alongside healthcare professionals, educators, industry partners, government officials and researchers and is patient advocate on several research projects including a pilot follow-up care clinics in the community project, designing a new National Children's Hospital for Ireland and introducing webcam technology into NICUs. She oversees neonatal curriculum reviews, lectures to students entering the field of neonatology and is active in several system review projects ie transport and primary eye-care services.

 

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Paula Guerra, Parents' Advisory Board

Paula Guerra

Portugal

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 diferent Portuguese banks and she now coordinates the IT Human Resources Department in one of those Portuguese banks.

Paula has been representing XXS within EFCNI since the first joint parents' organization meeting taking place in 2008, when XXS had only one week of existence.

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Dr. Tomasz Makaruk, Parents' Advisory Board

Dr. Tomasz Makaruk

Poland

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 15 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.

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Livia Nagy Bonnard

Livia Nagy Bonnard

Hungary

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.

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Gert van Steenbrugge, Parents' Advisory Board

Dr. Gert Jan van Steenbrugge

The Netherlands

Gert van Steenbrugge is father of two preterm children, born respectively at 34 and 26 weeks of pregnancy. He is director of the Dutch parent organization VOC (‘Vereniging van Ouders van Couveusekinderen’) and represents The Netherlands in EFCNI since the first joint parents' organization meeting in 2008.

In 1994 Gert started as volunteer at VOC and was board member and chairman till 2003, when he became director, a new function in an expending organization of volunteers.

Gert holds a Ph.D. in biochemistry and worked for many years in biomedical research. Having this background, his special interest and activities for the VOC organization 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 centers of the Dutch hospitals. This program is based on the parent perspective, with the focus on developmental and family-centered care.

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Dr. Eleni Vavouraki

Greece

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.

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Yannic Verhaest, Parent Advisory Board

Yannic Verhaest

Belgium

Chairwoman of the Belgian parents organisation VVOC (Vlaamse Vereniging voor Ouders van Couveusekinderen).

She joined the VVOC in 2007 as an active boardmember 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.

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Monica Virchez, Parent Advisory Board

Mónica Virchez

Spain

Mónica is mother of triplets born in 29 weeks of gestation in London, UK. Her babies received NIDCAP attention 11 years ago in the Winnicott Neontatal Unit in St. Marys Hospital.

Mónica has been supporting the organisation PREMATURA in Spain for 13 years, 10 of which she is president the association. She is a clinical Psychologyst as well as a trainer in baby massage, infant reflexology, kangaroo mother care. She is a clinical psychologist and attended a post-degree-course in prematurity at the Italian Hospital in Argentina.

In her daily work, she is in contact with issues like: attachment, bonding, kangaroo mother care, baby massage, reflexology for babies, breast-feeding, follow up for premis, pregnancy, baby body language and stress in mothers, Brazelton, NIDCAP. She has working experience with babies, small children, parents and families of preterm infants and guided workshops with parents groups.

Mónica is a member of Multiple Births Association UK, Baby Massage, National Health Ministry Program for Natural Births in Spain, Pro-birth National Platform Spain, Kargaroo Mother Care, Reflexology Association, Winnicott Baby Foundation, EFCNI and is in regular contact with hospitals and associations in Spain and other countries.

Mónica lived in Italy, UK, Germany and Spain and speaks fluently Spanish, English and Italian.

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