Scientific Advisory Group
The Lullaby Trust works with leading professionals who are experts in the field of sudden infant death syndrome (SIDS) and infant health and care practices and are an invaluable resource to our staff.
Our trusted team bring a wide range of experience, ensuring we always have an expert to call upon with the most complex questions about SIDS and infant health and care practices.
Dr Anna Pease (Chair)
Anna has worked for the last 16 years in Sudden Unexpected Death in Infancy (SUDI) prevention, starting in New Zealand, working for a charity promoting safer sleep for babies through a variety of interventions at both national and local level. She completed her PhD, funded by The Lullaby Trust, at the University of Bristol in 2016, exploring decision-making in families with infants at increased risk of SIDS, using both quantitative and qualitative research methods. The findings of her PhD research has informed subsequent risk reduction campaigns from The Lullaby Trust. She also conducted a review of the risks of swaddling and SIDS, which also contributed to enhanced advice for families. In 2018 she was awarded a Launching Fellowship to investigate intervention design, implementation and evaluation, keeping families at the heart of this process through coproduction. She is continuing her research in Bristol as a Research Fellow currently funded by the National Institute for Health and Care Research on an Advanced Fellowship, developing and testing new ways to support families and improve infant sleep safety. So far this includes developing and evaluating a new risk assessment and sleep planning tool, and a safer sleep milestones care for babies on neonatal units.
Professor Marta C Cohen
Marta is a Consultant Paediatric Pathologist, the Clinical Director or Pharmacy, Diagnostic and Genetics and Head of the Histopathology Department at Sheffield Children’s NHS Foundation Trust. She is also an Honorary Professor of the University of Sheffield, Department of Oncology and Metabolism. Here, Marta teaches medical students, co-supervised PhD or intercalated BMedSci degree students. Marta has an international research profile and is an opinion leader in paediatric pathology and the investigation of sudden infant death. As part of her work, Marta acts as Senior Examiner in Paediatric Pathology for the Royal College of Pathologists and is also the academic lead for the Specialty Advisory Committee on Prenatal, Perinatal and Paediatric Pathology and is a Board Member and Fellow of the Academy of Forensic Medical Sciences. Marta also holds a number of international positions, including as Board Member for the International Society for Study and Prevention of Perinatal and Infant Death and Sudden Unexpected Death in Childhood (SUDC) Foundation Advisory Board (US) and SUDC Foundation UK. Marta was named in The Pathologist’s Power List of most influential pathologists. She has co-edited 3 books and 1 book serious, as well as many journal papers and contributes at international conferences.
Keren is the CEO of Red Nose Australia, an Australian charity working to save little lives and support families impacted by the death of a baby or child. Keren has thirty years of clinical and business experience including a degree in Psychology, a Master of Counselling and a Graduate Certificate in Bereavement Counselling and Intervention. Keren has worked in supporting bereaved parents and families, providing clinical supervision and educating other professionals in the field. Through her work at Red Nose, Keren is passionate about ensuring best practice safe sleep standards for all babies within Australia as well as ensuring all families receive good quality bereavement support after the death of a baby or child. Keren is dedicated to upskilling all those within the community and healthcare system to better understand the importance of a safe sleep protocol and evidence-based bereavement support. As a consumer expert, Keren is driven to ensure that research, resulting in the saving of little lives, is translated into layman’s term and accessible to all families.
Dr Paul Davis
Paul has been a consultant paediatrician in Cardiff since 1993. He is a CONI paediatrician and has had an interest in sudden infant death and bereavement support for families since the early 1990’s. His NHS role includes acute general paediatrics and community paediatrics, including working with children with disabilities, autism and ADHD, as well as having an interest in child safeguarding. He previously worked with Public Health Wales to produce a Thematic Review of Sudden Unexpected Death in Infancy in 2015 (Sudden Unexpected Death in Infancy – A Collaborative Thematic Review 2010-2012).
Alison is CEO/Executive Director of First Candle, a charity based in the United States of America. The charity focuses on SIDS and Alison has been involved since the loss of her first son to SIDS in 1997. For six years she served on the Board of Directors and continued to play a role as spokesperson and consultant. Alison assumed the role of Executive Director/CEO in 2016 and has since guided the organisation through a rebranding and renewed focus on addressing the racial disparities in the rates of SIDS and how implicit bias and social determinants of health factor into these deaths. This led to the development of First Candle’s safe sleep and implicit bias training program for care providers, Straight Talk for Infant Safe Sleep and their community-based parent education program Let’s Talk Chats for safe sleep and breastfeeding. Her collaborative work with organisations and agencies including the Black Mothers Breastfeeding Association, Centre for Black Women’s Wellness, the March of Dimes, the NICHD, HRSA, CDC and American Academy of Paediatrics has helped her forward the organisation’s mission to get every baby to their first birthday. As a SIDS mom herself, providing bereavement support services to families who have experienced a loss is also a top priority for her. She personally works with families and oversees First Candle’s online support groups. Prior to her role in the child safety area, Alison was SVP at Weber Shandwick, one of the world’s largest PR firms, where she led business development initiatives for Fortune 500 companies and developed rebranding campaigns and launched programs for numerous consumer brands. Alison is mom to four children, stepmom to another two and care giver for her husband with Multiple Sclerosis and son with intellectual disabilities. She also serves on the Board of STAR Inc., a not–for-profit organisation serving individuals of all ages who have developmental disabilities.
Marilena is the Interim Deputy Regional Director for Public Health at the Office of Health Improvement and Disparities (OHID) East of England Region. She qualified in medicine from University College London Medical School in 1994. After registration, she worked in paediatrics and subsequently the Confidential Enquiry into Stillbirth and Deaths in Infancy, which identified many risk factors for SIDS that have contributed to the huge fall in rates since the 1990s. Marilena was responsible for the cross-government Review of the Health Inequalities Infant Morality PSA Target, which was published in February 2007 and subsequent Implementation Plan for Reducing Health Inequalities in Infant Mortality: A Good Practice Guide, published in December 2007.
Maggie has worked in health visiting for 40 years, working in different parts of the country in a variety of generic and specialist roles. Her specialist areas of expertise are sleep, parenting, supporting couple relationships and promoting perinatal and adult mental health. Maggie works as independent consultant and trainer working with a variety of national organisations. This involves working part time with the Institute of Health Visiting which she is a Fellow of. At present she is involved in an international systematic review on infant sleep working with researchers in both Canada and Australia. Maggie was successful in obtaining a small grant from the Burdett Trust for Nursing to help fund part of this work.
Dr Joanna Garstang
Joanna is a Consultant Community Paediatrician and academic based in Birmingham. She has worked with SUDI and SIDS families since 2006, helping set up the original multi-agency SUDI training at Warwick University. Her PhD (2015) concerned evaluating the Joint Agency Investigation of SUDI, with findings contributing to the 2016 Kennedy guidance. Since then, her research has concerned improving child safeguarding practice, prevention of SUDI, families with recurrent SUDI, and the relationship between child protection concerns and child mortality. Joanna is also Designated Doctor for Child Death for Birmingham and Solihull, and leads the local SUDIC service. She is chair of the Child Death Review working group of ISPID (International Society for the Prevention and Study of Infant Death) trying to bring best CDR practice to an international forum and chair of the newly established UK Association of Child Death Review Professionals.
Professor Mike Campbell
Mike is Emeritus Professor of Medical Statistics at the University of Sheffield. He became interested in working on SIDS in Southampton when a close friend had a baby that died of SIDS. In the course of his work, he has conducted research on the relationship of SIDS and the weather. When he came to Sheffield he joined the Care of the Next Infant (CONI) team and gave courses on risk to CONI coordinators. He has analysed data from CONI and looked at risks associated with babies subsequent to a SIDS baby.
Professor Helen Ball
Helen is Professor of Anthropology at Durham University and Director of the Durham Infancy & Sleep Centre, an academic research unit studying parent-baby sleep behaviour. She has authored over 120 publications on infant care. Helen co-founded Basis (the Baby Sleep Info Source) in 2012, and has served as Chair of The Lullaby Trust Grants Committee since 2016. She is an elected board member of ISPID (International Society for the Study and Prevention of Infant Deaths) and Associate Editor of Sleep Health, the journal of the National Sleep Foundation. In 2018 she received the Queen’s Anniversary Prize for her research and outreach work in infant sleep, and in 2022 is recipient of the Patricia Martens Award for Excellence in Breastfeeding Research.
Dr Stephanie Henderson-Begg
Stephanie is a Director in the banking regulation team at PwC, providing advice to bank boards and senior management teams. She has a particular passion for training and coaching from her time as a Senior Lecturer at the University of East London and has a background in primary academic biomedical research. In her spare time as well as chairing the Board of Trustees for The Lullaby Trust, she has acted as Chair and Secretary for her local British Sub Aqua Club and as a School Governor for two local primary schools where she was Chair of Governors and Chair of the Pay & Performance Committee at different times. Stephanie is a bereaved parent and mother to two living children who has first-hand experience of using our services.
Dr Emily Prior
Emily is a Paediatrician at Chelsea and Westminster Hospital. Emily qualified from Imperial College in 2012 and has worked a across a number of hospitals in North-West London during her paediatric training. She was awarded a Medical Research Council Fellowship in October 2020 and currently splits her time between working in research in the Academic Neonatal Medicine department at Imperial College and clinically on the neonatal unit at Chelsea. Her research is focused on investigating long term health outcomes of children born preterm. She also sits on the Royal College of Paediatric and Child Health’s Engagement Committee and Great Ormond Street Hospital parent advisory group for research. Emily is married to Benoit and they live in South-west London with their young daughter.
Carol’s working history began many years ago working in retail management for Mothercare. Her first daughter was born in 1985 and Carol started her own company Kid Rapt in 1992 to launch a child restraint matchbox cover called Matchguard. The company remit was originally to be the missing link between local authorities and product suppliers and alert local authorities of safety concerns or issues surrounding the use or provision of certain products. This developed into working with safety organisations such as The Child Accident Prevention Trust (CAPT) and The Royal Society for the Prevention of Accidents (RoSPA) and The Lullaby Trust. Kid Rapt Ltd is partnered with RoSPA to deliver SAFE AT HOME – the National Home Safety Equipment Scheme. Carol is Vice Chair of the RoSPA National Home Safety Committee which allows a working relationship with product standard experts and the Office for Product Safety and Standards.
Sally has had varied career in charities, national and local government. Prior to joining PEDAL – Play in Education, Development and Learning (University of Cambridge), she was Deputy CEO at the Parent-Infant Foundation where she led work to raise awareness of the importance of the earliest years, and to drive change at a local and national level. Sally coordinated the All-Party Parliamentary Group for Conception to Age 2 and established the First 1001 Days Movement, a campaigning alliance of over 200 charities and professional bodies. Sally’s earlier roles included Strategic Lead at the Maternal Mental Health Alliance, Senior Commissioner in a Local Authority, and Development Manager for Children Under One at the NSPCC, where she developed and implemented research-led interventions. Sally started her career as a Civil Servant working on Children’s Policy in Westminster and New South Wales, Australia. She has authored a range of influential policy reports relating to the importance of the earliest years of life and issues affecting families during that time.
Deborah is a Quality and Standards Advisor at the Royal College of Midwives. As a midwife she has assisted families in preparing for and looking after their babies, in safer sleeping and prevention of SIDS. With her many years of experience as a midwife she has also supported families during the difficult times of bereavement. She has a special interest in quality and safety and uses her expertise in clinical midwifery practice to influence and promote policy for safe maternity and neonatal care. Deborah is also a Newborn Life Support (NLS) instructor for the Resuscitation Council UK.
Our Grants Committee is composed of professionals with expertise in SIDS from a range of disciplines, including paediatrics, pathology and epidemiology, as well as a bereaved parent representative.
They generously volunteer their time to meet and review research applications based on their scientific merit and relevance to our work, and make recommendations to our Board of Trustees. They meet together at least once a year.
The Scientific Committee also take the views of our Lay Panel into consideration, which is a body of bereaved family members who kindly volunteer to review applications and share their opinions.
Members that are also part of the Scientific Advisory Group:
Dr Helen Ball (Chair)
Dr Stephanie Henderson-Begg
Dr Anna Pease
Professor Mike Campbell
Dr Sarah Johnson
Sarah joins the committee as a bereaved parent; Daniel died unexpectedly at 3 months old and is still loved and missed. The Lullaby Trust strives to ensure the voice of those affected by sudden infant death is fully considered in any research it supports, and Sarah provides this voice. Sarah also has professional experience, enabling her to evaluate scientific projects. She is currently Vice President of Clinical Affairs at QIAGEN, a molecular diagnostics company, and oversees many clinical studies examining the performance of diagnostic tests for genetic causes of disease and infections. Previous to this role, she was a director of clinical research, leading projects relating to pregnancy and fertility. Sarah endeavours to use her professional and personal experiences to help The Lullaby Trust make best use of its resources to support research to prevent babies from dying.
Dr Victoria Thomas
Biography to follow.