Organisational Structure

Organisational Structure

Glance is a transnational organisation, founded and led by the European Foundation for the Care of Newborn Infants (EFCNI). GLANCE consists of a worldwide network of parent- and patient organisations. It is supported by a Founding Committee, the Chair Committee, specially assigned Working Groups and other partners like scientific societies and global NGOs.

GLANCE was initiated under the umbrella of EFCNI and is coordinated by the following EFCNI founding members:

Silke Mader, Germany

Silke Mader has been a passionate and influential advocate for maternal and newborn health for over 20 years. As a former patient with HELLP syndrome and mother of preterm babies at week 25 (twin boy survived at 515 grams, twin girl deceased), she built on all of her personal experience to improve care for parents, preterm babies and sick newborns. Care that hardly existed at the time. She knows from her own experience that a strong partnership between health professionals and parents is the best way to face the emotional roller coaster ride of a preterm or sick baby and to overcome the obstacles. This led to establishing EFCNI – European Foundation for the Care of Newborn Infants in Munich 2008 where she acts as Chairwoman and founding member. One of the major achievements of the foundation was the establishment of World Prematurity Day, the development as well as the implementation of The European Standards of Care for Newborn Health founding of the Global Alliance for Newborn Care (GLANCE).

In times of the pandemic, GLANCE joined forces with partnering parent organisations, healthcare professionals and medical societies all over the world to develop its first global campaign “Zero Separation. Together for better care! Keep preterm and sick babies close to their parents”.

Silke Mader is the author and editor of many publications on topics related to maternal and newborn health and received several national and international awards and medals for her engagement.

Nicole Thiele, Germany

Nicole Thiele joined EFCNI in early 2010. She holds a diploma as European Secretary/ESA and has a university degree in Economics, Management and Business Administration and speaks German, English, French and Spanish. She lived in Paris for several years and has gained extensive experience in different positions within multi-national companies.

With her family experiencing the consequences of an extremely preterm birth more than 40 years ago, she is personally committed to driving forward the prevention of prematurity and especially the philosophy of individualized, developmentally supportive care and parental empowerment, crucial contributors to give a baby the best start in life.

Nicole is author, (co-)author and (co-)editor of different information material, brochures, factsheets, articles and reports on topics within maternal and newborn health.

Aurelia Abenstein, Germany

Aurelia Abenstein joined EFCNI in April 2016.

Aurelia has a diploma as Foreign Language and Event Assistant and holds a university degree in Geography. She has substantial international experience living, studying and working abroad for several years and speaks English and Spanish. Before joining EFCNI, Aurelia worked as Head of Administration in an international environmental consultancy.

Due to her goal to live her life in a social and ecologically sustainable way she wants to support EFCNI in its mission to improve the situation of mothers and newborn infants in Europe.

Sarah Fügenschuh, Germany

Sarah Fügenschuh was part of EFCNI from 2017-2024.

She studied Political Science, Public International Law and English Literary Studies in Munich and Copenhagen and holds a Magister Degree in Political Science from the LMU Munich. She later continued her studies abroad and gained a Master of Science Degree in Welfare Policies and Management from Lund University in Sweden. Sarah acquired practical experience in corporate and public communications for welfare institutions, public relations agencies and also worked as a freelance journalist as well as a Social Media and PR Manager. Topics like education and healthcare have always been a focal point of both, her studies and her work.

As EFCNI’s Head of Communications she dedicated her skill set to promote the needs and interests of newborn and sick infants and their families and enable these parties to participate in the political and public discourse.

Founding Committee

The Founding Committee met one time only in June/July 2019 for the first Chair Committee Meeting and acts as the first Chair Committee The following nineteen patient representatives were instrumental in the launch of the first GLANCE Chair Committee meeting June 30 – July 1, 2019, and are recognised as the Founding Committee of GLANCE:

Fabiana Bacchini, Canada

As the Executive Director of the Canadian Premature Babies Foundation (CPBF), Fabiana leads the organization in its mission to support and raise awareness about the challenges faced by premature infants and their families.

Fabiana’s journey began while she was in the neonatal intensive care unit (NICU) with her surviving twin, who was born extremely preterm. It was during this time that she became involved in the study of Family Integrated Care (FICare), a model of care that emphasizes involving parents in the care of their premature infants. Inspired by her experience, Fabiana dedicated herself to volunteering in the NICU at Mount Sinai Hospital and became an ambassador for FICare, spreading awareness about this model of care across Canada and internationally.

Fabiana serves as an advisor on various committees and advisory boards. She is a member of the International Steering Committee for FICare, which highlights her expertise and involvement in shaping the direction of this care model on a global scale. She is also involved with the Child-Bright Network, an initiative that focuses on improving outcomes for children with brain-based developmental disabilities, and the PREMSTEM project, which focuses on stem cell research for premature infants. Furthermore, Fabiana sits on the advisory board of the Canadian Institute for Health Research’s Institute of Human Development, Child and Youth Health (CIHR-IHDCYH), contributing her insights to inform research. She collaborates with researchers nationally and internationally.

In 2020, she received the EFCNI (European Foundation for the Care of Newborn Infants) awards for her outstanding work with the Canadian Premature Babies Foundation.

Oleksandra Balyasna, Ukraine

Oleksandra Balyasna is 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 in 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 Bentoom, Ghana

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 of 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, policies, 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.

Ilein Bolaños, México

Ilein Bolanos, a certified corporate lawyer, became a mother of premature twins, at 32 weeks of pregnancy in 2007. After this experience, she became a passionate advocate and a voice for premature and sick babies, with the goal to give every child the chance for the best start in life. She founded the first support group in a hospital with the largest private NICU in Mexico as well as the first virtual community in Spanish, on Facebook for parents of preemie babies and multiples in 2010.

In 2011 she became Co-founder and General Director of CON AMOR VENCERAS, A.C. A parent organisation of premature and ill babies, based in Mexico, but with influence in all Americas. In 2016 she received the EFCNI “We Care” award for her outstanding work with her organisation in Mexico.

Ilein has participated in different national projects like “Genomic of Premature Birth”, “RSV infection in Mexico, reflections on the Immunological equity”, “The Manual for Parent or Premature Babies” and “Prematurity and challenges, prevention and management”, among others.

Internationally she was featured and contributed to the 2018 joint report by the World Health Organization and UNICEF titled ‘Survive & Thrive: Transforming care for every small and sick baby’.

Mandy Daly, Ireland

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 a 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, Portugal

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 has worked in IT development departments of three different 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, USA

Gigi is a mother of a surviving twin son born at 24 weeks who is now legally blind. She is an International Coach Federation (ICF) Credentialed Professional Performance Coach and Founder of Families Blossoming LLC, a company passionate about providing transformative Professional Coaching and Emotional Wellness services to parents, professionals and organizations. Her niche area is NICU parents and professionals, but her clients range from individuals and professional teams to medium to large-size organizations across the healthcare, education and corporate sectors. She also partners with business-psychology consultancy groups to help them deliver on a range of career development, inclusion and diversity and organizational wellness initiatives.

Gigi received her BSc (honours) in Occupational Therapy (USA), her MSc in Health, Population and Society from The London School of Economics and Political Science (UK), her Diploma in Personal Performance Coaching (Distinction) from The Coaching Academy (UK) and further Coach training from invite Changes FASTRACK Program (USA). Gigi holds an ACC credential from The International Coach Federation (ICF), serves on the Board of the Preemie Parent Alliance (PPA) in the USA, is a member of the National Alliance for Patient Access, the International Coach Federation (ICF), the ICF UK Charter Chapter and the Parent Advisory Board of the European Foundation for the Care of Newborn Infants (EFCNI).

Alison McNulty, Northern Ireland

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 of 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, the 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 two CIPD Diplomas and a Masters in Voluntary Sector Management.

Livia Nagy Bonnard, Hungary

Livia Nagy Bonnard has been one of the founding members of Right(s) beside you Association. The Association brings together doctors, medical professionals, policymakers, 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.

Nina Nikolova, Bulgaria

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 birth as a serious problem and to educate the public to reduce the rate of preterm birth and give a 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.

Ilknur Okay, Turkey

After 22 years of professional life in major local and international companies as a mid-level manager, Ilknur dedicated her career to working for the good of humanity. She obtained CTI professional coach certificate from the USA, also becoming an ACPI certified parent & family coach. Ilknur obtained an MSc degree in Psychology along with a certificate in Interpersonal Therapy. She is a trained conflict management coach as well.

She is the co-author of two published books: The 1st one is for the families of multiples “Life with Multiples: From A to Z” and the 2nd is for families of premature babies “From Incubator to World”.

Coming from a diverse culture and wide experience in working with different cultures and backgrounds, she has a good understanding of the needs of people and families most of whom are less privileged and have pressing needs. She has been proudly advocating for premature babies and their parents since 2008 in Turkey with campaigning, petitioning, presenting in medical congresses, setting psychoeducation models, training parents and much more.

Kylie Pussell, Australia

After suffering a miscarriage and losing twin babies at 16 weeks, Kylie gave birth to her daughter Madeline at 30 weeks and was diagnosed with Cervical Incompetence. Two years later, following a further miscarriage, Kylie delivered twins at just 25 weeks. Sadly Kylie’s son Marcus passed away due to complications from his extreme prematurity. Her daughter Scarlet was discharged home just before her due date, 4 months later. Kylie’s son Liam was born at 38 weeks through a planned c-section following a transabdominal cerclage.

Kylie Pussell co-founded Miracle Babies Foundation in 2005. She is CEO of the foundation and passionate in driving the expansion of services and resources across Australia for all families to be supported, educated and empowered. Kylie, a qualified counsellor, has played an integral role in the expansion of the foundation’s program NurtureTime, the introduction of Miracle Babies Foundation to hospitals nationally and the development of national resources. She developed and implemented Miracle Babies Foundation’s successful volunteer program, designing National Volunteer Induction and Training with TAFE NSW. Kylie was selected in the inaugural The Growth Project in 2015.

Kylie delivers presentations and forums on the Foundation to community and corporate, both nationally and internationally and shares her personal journey with her children, delivering parent support and positive change for premature and sick babies. Kylie leads support for bereaved families and assists families and educational institutions in the learning, social and emotional challenges some of these miracle babies experience in the early years, school-aged years and adulthood.

Kylie is a Co-Investigator on the POD Study, POD 2 and a previous member of the PSANZ Perinatal Palliative Care Special Interest Group.

Asta Radzevičienė, Lithuania

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 jewellery project “Vilties feja” (“Fairy of Hope”). This jewellery 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, Greece

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 the 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 the Therapeutic Riding Association of Greece, an 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.

Working Groups

Working Groups will guide all activities of GLANCE. They are set-up as an international and interdisciplinary, multi- stakeholder collaboration of patient representatives, healthcare professionals, researchers, industry representatives, organisational educators and other relevant stakeholders. The Working Groups develop and coordinate campaigns, projects and initiatives that aim to support the objectives of GLANCE.