Meet the Team
NEC UK Trustees
Trustees share ultimate responsibility for governing NEC UK and directing how it is managed and run.
Founder & Chairperson
Susan is a bereaved parent whose baby sadly died post surgery as a result of NEC.
Maz is a parent of a young child who developed surgical NEC and who has ongoing complex needs as result of NEC.
Lyndsey Kociuba Treasurer
Lyndsey is a bereaved parent of a twin who sadly died from medical NEC.
Nicola is a adult survivor of surgical NEC and also a parent of a twin who had surgical NEC.
Verified Volunteers have been screened and vetted for their roles and support the day to day running of NEC UK in various ways. Verified Volunteers are approved to represent charity.
Sam is a parent of an older child who had surgical NEC as a baby.
Laura is a parent of a young child who had surgical NEC and who has ongoing complex needs as a result of NEC.
Colleen is a parent of a young child who had surgical NEC at term gestation.
Medical Advisory Panel (MAP)
MAP will form as a multidisciplinary team of professionals who kindly offer their expertise and time to advise NEC UK. MAP members are not responsible for any actions or decisions made by the charity.
Nicholas Embleton is Consultant Neonatal Paediatrician and Professor of Neonatal Medicine, Newcastle University, qualifying with honours in Medicine at Newcastle University (MBBS 1990). His doctoral thesis (MD 2002) was on protein requirements in preterm infants and he continues his academic nutrition interests as a member of ESPGHAN Committee of Nutrition, as well as chairing the UK based multi-disciplinary Neonatal Nutrition Network (N3) http://neonatalnutritionnetwork.org/ . Working with colleagues in Newcastle upon Tyne, he helps lead a broad portfolio of translational research www.neonatalresearch.net. Studies include large scale NIHR collaborative trials as well as mechanistic studies focused on gut function, growth, and nutrition and necrotising enterocolitis. He also coordinates the Newcastle Preterm Birth Growth study tracking the growth, cognitive and metabolic outcomes of children who were born preterm into late adolescence. Current studies include exploring the impact of an exclusive human milk diet in very preterm infants and feeding in late and moderately preterm infants, as well as working with colleagues in Liverpool, Nigeria and Kenya helping to establish a Neonatal Nutrition Network in sub-Saharan Africa. He is clinical lead for quality improvement studies focused on loss of a co-twin, which have created a unique film-based educational resource with parents: the Butterfly project www.neonatalbutterflyproject.org. He works with the European Foundation for Care of the Newborn Infants https://www.efcni.org/ to help disseminate these, and develop other guidelines worldwide. Publications available https://orcid.org/0000-0003-3750-5566
Dr Janet Berrington is a Consultant Neonatal Paediatrician in Newcastle and Honorary Clinical Senior Lecturer in Neonatal Medicine, Newcastle University, UK. She trained in the UK and Australia, and completed an MD in neonatal immunology. She has contributed to a wide programme of neonatal research including two large national NIHR funded feeding trials (SIFT, Speed of Infant Feeing Trial) and the immunonutrient trial of supplementary lactoferrin (ELFIN), each recruiting more than 2000 infants. She is manager of the Great North Neonatal Biobank, a biorepository of samples from >700 preterm infants. She is a co-app on the EME funded mechanistic microbiomic and metabolomic study of lactoferrin (MAGPIE, Mechanisms Affecting the Gut of Preterm Infants in Enteral feeding trials), and a member of the UK Neonatal Nutrition Network. She has led observational studies on the neonatal microbiome and metabolome, and facilitates ongoing translational research in neonates, particularly in relation to necrotising enterocolitis and late onset sepsis development, prevention, diagnosis and treatment, and including the development of a preterm enteroid model.
Dr Christopher Stewart has researched the early life microbiome in health and disease for the past decade, specializing on infants born premature (<32 weeks gestation). In that time, he has published over 50 peer-reviewed manuscripts and has regularly presented his work at national and international conferences. Following his PhD and a Fellowship in the UK, he moved to Baylor College of Medicine (Houston, TX) as a Post-Doctoral Associate, performing both computational and wet-lab experimentation. He then moved to Newcastle University (England, UK) in January 2018 as a Marie Skłodowska-Curie Actions Fellow and is currently building his lab focused on microbial-host interaction in the gut. Within preterm infants, his research group is focused on necrotising enterocolitis (NEC) and late onset sepsis (LOS). By applying state-of-the-art sequencing to clinical samples collected at the Royal Victoria Infirmary (Newcastle upon Tyne), his research has shown that specific microbes are associated with protection from both NEC and LOS. Using a recently developed model that combines human preterm intestinal cells alongside viable microbes, his group is now researching host-microbial interaction to better understand how the microbiome contributes to health and disease in preterm infants.
Dr Clara Chong is a trainee in paediatric surgery currently working at the Evelina Children Hospital in London. She has looked after many babies with NEC and is working on some research projects to improve their care. Paediatric surgery has taken Clara to many places across the world including New Zealand, Samoa and a number of children hospitals in the UK. She has also worked in places with less resources in her spare time including Myanmar, Nepal, Turkey, South Sudan and Sudan.
Claire is a parent of a young child who survived surgical NEC & has ongoing complex medical needs.