Parent Advisory Board

EFCNIs Parent Advisory Board was launched in 2013 . The ten international members of the board are elected for five years by our partner parent organisations and meet once a year at the Parent Organisation Summit to discuss upcoming milestones and how to achieve them. Our current Parent Advisory Board includes representatives from Bulgaria, Ghana, Greece, Hungary, Ireland, Ukraine, USA, Lithuania, Northern Ireland and Portugal.

Parent Advisory Board (February 2019 - January 2023)

Oleksandra Balyasna is a head of the Early Birds Ukrainian Preemie Parent Association which she co-founded in 2016. Oleksandra is a mother of a child born preterm in 2012. During her stay in the NICU Oleksandra faced a lack of support and of main goods for preterm babies, leading her to the foundation of a social business for  the production of nests and tiny clothes, her main activity till today.

Alongside her social business, Oleksandra organised many charity and social projects and finally co-founded  the parent association, where the dialogue between parents, professionals, government and companies can now also be more  effectively organised. Prior to working for the Association Oleksandra had been involved in charity projects within the  Foundation Velvet hearts for more than 7 years helping children, elderly people, animals.

Since 2013, Oleksandra is an active participant of social projects and campaigns to support preterm babies and their parents in Ukraine, co-organiser of educative conferences for parents and doctors and a  volunteer at the Ministry of Healthcare of Ukraine. Since 2019 she is a member of the Parent Advisory Board of EFCNI.

Selina is a mother of a surviving preterm child in Africa, an advocate for Maternal and Newborn Health and the Founder and Executive Director of the African Foundation for Premature Babies and Neonatal Care (AFPNC). Selina is a Human Resource Professional with over 10 years’ experience in working on local and international human capital development projects.

She holds a Bachelor’s degree in Business Administration (Human Resource Management), certificates in Strategic Planning, Project Management and Communication and is also training to be a Lawyer. In August 2016, the Ghana Health Service appointed her as a member of  the Advocacy & Communication Sub-Committee for National Newborn and Child 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’.

In Africa, she has pioneered several intervention initiatives, policy, research projects and is a sought after conference speaker in her capacity as a Parent Representative and the Executive Director of AFPNC.  Selina received a prestigious award in January 2019 from EFCNI for her outstanding work.

Livia Nagy Bonnard 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 preterm 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).

Livia Nagy Bonnard is a member of the Parent Advisory Board of EFCNI.

Mandy is a medical and disability underwriter and a parent of a preterm infant born at 25+6 weeks gestation in 2006. Since that time she has been advocating in the neonatal space and in 2013 she founded the collaborative multi-stakeholder platform, The Irish Neonatal Health Alliance.

Mandy has extensive experiential and deep sectoral knowledge and specialises in the areas of Advocacy, Education and Research. Her many successes in the field include effecting several neonatal and paediatric health system reviews, developing and delivering curricula and continued education to medical students, mentoring PhD students, serving on the NIDCAP Federation International Board since 2012 and working as patient collaborator on several national and international research studies. Additionally Mandy has published articles in the British Medical Journal, The Lancet, The Journal of Obstetrics and Gynaecology and Trials.

Paula Guerra is one of the founders of the Portuguese preemies association XXS – Associação Portuguesa de Apoio ao Bebé Prematuro, being an executive 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 preterm born 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 is since 2010 the Head Talent Management of the IT Department in one of those Portuguese banks. Paula Guerra is a member of the Parent Advisory Board of EFCNI.

Gigi Khonyongwa-Fernandez, is the mother of four angel babies and a surviving twin born at 24 weeks. She is both an International Coach Federation (ICF) accredited Professional Coach and a Trauma-Informed Certified Coach, and founder of GKF Coaching and Consulting. Her niche areas are leadership and organisational wellness, NICU leaders/community, diversity, empowerment, and wellbeing. She is passionate about imbedding joy and clarity within leaders in any sector and throughout the workplace culture. Gigi’s clients range from individuals and professional teams to medium to large-size organisations across the healthcare, education, faith-based, government, industry, and corporate sectors. She also partners with several consultancy groups to help them deliver on a range of leadership, diversity, and organisational development initiatives and is a vocal advocate for equity in the healthcare and educational realms.

Gigi holds a BSc in Occupational Therapy (USA), MSc in Health, Population and Society (UK) and a Diploma in Personal Performance Coaching (UK/USA). She has almost 20 years of international clinical, strategic and project management experience within the healthcare sector both in the USA and UK health systems and holds global board appointments in the maternal-infant health sector. Gigi currently serves as the President of the Board for NICU Parent Network (NPN), a PPAB member for European Foundation for the Care of Newborn Infants (EFCNI), and a Chair Committee Member for the Global Alliance for Newborn Care (GLANCE). She is an experienced international speaker, presenter, and facilitator.

A native of the USA, Gigi currently resides in London, England.

Alison was appointed as CEO to TinyLife, Northern Ireland’s(NI) only premature baby charity in April 2013. This unique charity delivers services to parents in the neonatal unit, in family homes and in local communities as well as leading on research, advocacy, training and campaigning for families of premature babies.

With over 25 years experience working in the NGO sectors, Alison previously worked as a senior manager with babies, child and young people and their families providing education, support and guidance In her previous position she worked for 12 years as the Director of The Parenting Forum NI on parental engagement, consultation and co-design and co-production projects. Over the years she has been a Trustee with several NGOs in NI, UK and Europe campaigning for parental engagement in the development of strategies, policies and practices that affect families, children and young people.

She is currently the lay member on the Board of Neonatal Network NI, NI Maternal and Infant Steering Group, Breast Feeding Strategic Implementation Group and Infant Mental Health Implementation Group. She has been co applicant and supported a number of research projects and has published a number of articles in journals. Alison holds twos CIPD Diplomas and Masters in Voluntary Sector Management

Nina Nikolova is a co-founder and a chairwoman of the first Bulgarian foundation for premature babies. The foundation works closely with parents, medical care professionals, stakeholders and other NGO’s. The Foundation also seeks to raise awareness of preterm birthas a serious problem, and to educate the public to reduce the rate of preterm birth and give better start for all babies born too soon. Nina is a mother of twins born preterm.

Nina has a bachelor’s degree in French linguistics, and experiences as a translator and as a primary teacher; In the last 18 years Nina has been working in the real estate area as a sales representative, Sales and Marketing Manager, and for the past 13 years as a Sales manager in the biggest real estate holding in Bulgaria; She is working in a dynamic area with different clients and companies.

Nina Nikolova is a member of the Parent Advisory Board of EFCNI since 2019.

Asta Radzevičienė is a founder of the association “Neišnešiotukas”, the first Lithuanian NGO established in (September) 2012 to support preterm born babies and their families. Its mission is to make a difference for preterm born babies, by making sure they have the best possible chance of survival and reaching their full potential.

She implements innovative projects with families, hospitals and institutions, involving medical societies and NGO’s and is also an observer member at Vilnius Maternity Hospital.
In 2016, she and her organisation “Neišnešiotukas” received an EFCNI award for outstanding efforts and dedication in the field of newborn health. She founded a jewelry project “Vilties feja” (“Fairy of Hope”). This jewelry is a gift of hope for the ones who need it.

With two master diplomas in Management and Business Administration, she has had a long term experience leading the tourism department before she experienced preterm birth. Asta is a mother of two girls, one of which was born at 26 weeks gestation in 2008.

Asta is a member of the Parent Advisory Board of EFCNI since 2019.

Dr Eleni Vavouraki is a pulmonologist with a PhD in pulmonary rehabilitation; she is also specialised 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 co-founded the association Ilitominon, of which she is the President since 2011.

She has a wide teaching experience as a professor at Faculty of Health and Caring Professions of the Technological Educational Institute of Athens for 23 years. She is now working as a medical advisor in a Natural Products company, meanwhile she is teaching postgraduate courses in the Medical School of the University of Thessaly.

Eleni is also member of Therapeutic Riding Association of Greece, a NGO where children with disabilities (mainly due to prematurity) are helped to cope by improving their physical and psychological condition. Dr Eleni Vavouraki is a member of the Parent Advisory Board of EFCNI.