Brian Sommerlad, Consultant Plastic Surgeon and Chair of Trustees For over 40 years, I have been involved in operating on babies, children and adults who have been born with cleft lip and/or palate. Expand Although I have now retired from the National Health Service, I continued to operate both in the UK and in many countries abroad. As a plastic surgeon, I have been involved in many aspects of surgical reconstruction. However, I have increasingly focused on the challenge of trying to improve results in surgery for clefts. I have been aware of the lack of good quality data on techniques and outcomes and have tried to make some contributions in these areas. Travelling to many countries has convinced me of the need to try to help in improving care for children born with clefts in resource-poor countries. Most efforts by charities rely on flying in western teams for short visits or paying local surgeons to carry out the operations in private hospitals. Neither of these approaches builds for the future. If these NGOs disappeared, they would have had a negative impact in the long-term. In 2007, with Maddie Holmes (grandmother of a patient) and inspired by John Kettleborough (an ex-patient) we set up the charity CLEFT, with the aim of funding research to be carried out by the North Thames Cleft Team in Great Ormond Street Hospital for Children and the St Andrew’s Centre, Broomfield Hospital, Chelmsford, and also to support cleft lip and palate teams in resource-poor countries such as Bangladesh, Sri Lanka, Uganda, Egypt and Kurdistan. We have achieved a lot but there is much more to be done – helping to bridge the gaps in knowledge about the causes and treatment of clefts and trying to bridge the gaps between treatment in countries like the UK and countries like Bangladesh. In addition to being the current chairman of CLEFT, I am currently trying to split my time between looking after my own patients, regularly visiting the centres that we support overseas, and also keeping in touch with my own family of five children and currently fourteen grandchildren. It would be better if there were more hours in the day and more days in the year! http://www.sommerlad.co.uk/
Mark Dwyer My son Edward was born with a unilateral cleft lip and palate, and has been cared for by the GOSH team since he was born in 2010. Expand I was invited to become a trustee of the charity in 2011 after attending a presentation at Great Ormond Street and saw an opportunity to give something back and to help create sustainable improvements for those in developing countries where little or no care is available, and ongoing care is rarely available. A very important part of the CLEFT mission is to encourage lasting improvements in developing countries by providing training and equipment for local medical staff to provide care to cleft patients from childhood to adulthood rather than by flying in Western surgeons to provide primary care without focusing on follow-up care. As the parent of a child with a cleft, I was also keen to help support research into improvements in care and into the causes of clefts, which does not receive funding from pharmaceutical companies.
Norman Hay I was honoured to be invited onto the board of trustees for the cleft charity a number of years ago. Expand Joining the charity was an easy decision, as I felt the underlying ethos of the charity aims in aiding the delivery of local sustainable cleft care in middle- and low-income countries as well as supporting cleft related research reflected what I am passionate about. My involvement with world of cleft started back in 1990, when I first started attending cleft clinics with Brian Sommerlad and David Di Biase, both my trainers and mentors. Their energy and enthusiasm was an inspiration to me. I was appointed as a consultant cleft orthodontist at Great Ormond Street hospital back in 2003 and I am currently the clinical director for the North Thames cleft service. Since my involvement with the charity, I have been lucky enough to travel to meet local clinicians in Uganda, Egypt, Bangladesh and Venezuela where we have engaged together in the delivery of cleft care for the local population and shared the opportunity for teaching and training. The allegiances formed have also allowed us the opportunity to invite overseas clinicians, to our units in the UK, to shadow various specialities and help highlight the delivery of our holistic team approach. Finally, I have to be thankful to the charity for renewing my enthusiasm for cycling, when I was encouraged, back in 2016, to join the London 100 fundraiser and haven’t looked back!
Paul Morris, Consultant Plastic Surgeon I am a paediatric plastic surgeon with a specialist interest in cleft lip and palate surgery at Great Ormond Street (GOSH) for the last 8 years. Expand Just as with my wife Tracy, both work and home life are full of all things cleft! Through sharing my expertise I've been fortunate enough to train cleft surgeons at GOSH, who are now consultant cleft surgeons in the U.K. and around the world (Belgium, Canada and Chile). Most recently sharing my expertise in the management of cleft children with clinical teams from developing countries, including Bangladesh, has enabled CLEFT to support their local care of cleft children and families. In addition to surgical training, I am a keen cyclist and coordinate a team for CLEFT to participate in the annual Prudential 100 mile cycle ride in London It is a wonderful family weekend event that has raised significant amount of money and awareness for CLEFT. My aim for this coming year is to increase the number of cleft families that engage with CLEFT so that we can raise awareness, share the good work we do and of course get more families involved in fund raising activities.
Phil Stanier, Research Scientist I am a research scientist with a particular interest in studying the molecular and genetic basis that leads to a cleft of the lip and/or palate. Expand I joined UCL’s Great Ormond Street Institute of Child Health in 2006,which was an ideal opportunity to work closely with the North Thames Cleft team. Understanding the causes of cleft lip and palate is highly complicated since it involves many different genes and environmental risk factors, that sometimes interact together. My team, in collaboration with many researchers worldwide, have uncovered some of the key genetic and epigenetic factors that can lead to a cleft. We continue to try to understand how these impact on normal fetal development with a view to improving diagnosis, treatment and prevention. I have been closely involved with the CLEFT charity as a member of the Research Steering group since 2007.
Raouf Chorbachi, Consultant Audio-Vestibular Physician Dr Chorbachi is Consultant Audio-Vestibular Physician for the North Thames Cleft Services at Great Ormond Street Hospital and St Andrew's Centre, Broomfield Hospital in Chelmsford. Expand
Emily Anderson, Clinical Geneticist I first heard about the charity CLEFT through Mr Brian Sommerlad, who operated on my cleft lip and palate when I was a baby and I subsequently became a trustee in 2012. Expand I ran the Royal Parks Half Marathon for CLEFT in 2009 and I subsequently became a trustee. I have been involved in encouraging other young people to support the charity and I have also visited Bangladesh to see the challenges in providing comprehensive cleft care there. Having qualified as a doctor in 2012, I have now chosen to specialise in genetics. My own experiences, as a patient and as a doctor, mean I am particularly keen to support CLEFT’s work, both in research as well as overseas.
Rona Slator, Chair of the Research Steering Committee Retired, and living in the North Yorkshire countryside. Former Consultant Plastic and Cleft Surgeon at Birmingham Children’s Hospital and the West Midlands Cleft Lip and Palate Centre. Expand I was a student for a long time. I particularly enjoyed and learned from my research degree the excitement of knowing a small area in great depth and the results of experimental studies. As a medical doctor, initially very early in my postgraduate career, I was inspired by both the cleft surgery of Brian Sommerlad, and by his enthusiasm for auditing outcomes. I have been passionate ever since about knowing more about how well treatments for cleft lip and palate work. I was on the Steering Group of the James Lind Alliance Cleft Lip and Palate Priority Setting Partnership, the first Chair of the Cleft and Craniofacial Anomalies Clinical Studies Group, and President of the Craniofacial Society of Great Britain and Ireland. During my time as Chair of the CCC CSG we started the Early Careers Researcher Group. I was Clinical Lead of the West Midlands Cleft Service for many years, and Chair of the Cleft Clinical Directors Special Interest Group. I acted as the local PI for international cleft research projects, and encouraged research and audit within the West Midlands Cleft team which has led to a number of collaborations and publications. Funding for cleft research has always been hard to find. I welcome the chance through CLEFT: Bridging the Gap to continue supporting research into improving the lives of children and adults affected by cleft lip and palate. There are so many fascinating areas where we still know so little. If you would like to listen to Rona talking about the value of research to cleft professionals and patients, please click here.
Fiona Gilchrist Senior Lecturer and Honorary Consultant in Paediatric Dentistry Expand I am a paediatric dentist in Sheffield and the Lead Paediatric Dentist for the Trent Regional Cleft Network. I have worked with the cleft team in Sheffield since 2011, having previously worked with cleft teams in Edinburgh and Melbourne. My main research interests are in developing and using patient reported outcome measures (PROMs). I am currently involved in projects evaluating the routine use of these in children with cleft lip and palate and with other diagnoses. Outside of work I enjoy swimming, both indoors and outdoors!
Stephanie van Eeden Stephanie van Eeden, Lead Specialist Speech and Language Therapist (SLT), Regional Cleft Lip and Palate Service and NIHR Clinical Doctoral Fellow (2018-2023) Expand I have worked with the Newcastle cleft lip and palate team for 17 years and have led the speech and language service since 2009. I am currently undertaking a PhD investigating language and listening skills in children with cleft lip and palate. I am Chair of the Early Career Researchers Group in Cleft and Craniofacial Anomalies. My research interests also include Robin Sequence, outcome measures and the relationship between speech and language skills. I have spent some time in India working with cleft charities and delivering assessment and therapy through interpreters and local SLTs. When away from work I enjoy walking my dogs, running (slowly!) and watching football!
Yvonne Wren I am Associate Professor of Speech and Communication at the University of Bristol and also Chief Investigator of the Cleft Collective, a national cohort study which is investigating the causes, treatments and outcomes for people born with cleft lip and/or palate. Expand We are recruiting from all 16 regional cleft sites in the UK and have over 9000 participants. We are collecting biological samples for genotyping, parent questionnaires for information on children’s development and both child and parent well-being, clinical data direct from the 16 sites as well as linking to education and health data. The data collected are available for the international research community to access and use to address questions which will impact on clinical care and outcomes.
Helen Robson Clinical Nurse Specialist Expand My name is Helen Robson. I have been a clinical nurse specialist within Cleft Lip and Palate for 15 years. I became involved with cleft at the establishment of the centralisation of specialist care. I joined a network and was pivotal in developing a nursing service at outreach centres within the network. I very much value multidisciplinary working and have enjoyed establishing a nursing service supporting early feeding support. I have maintained a community focused model enabling nurses to problem solve and practice autonomy. My research interests include the management of Robin babies and have been a participant in the international research consensus group. I also have an interest in sleep obstruction and am a PI in a research study called SLUMBRS. I am a non-medical prescriber. Developing research within cleft and especially within nursing is invaluable as well as education. I am involved in a teaching programme in Tajikistan and have also supported the European cleft nursing programme. I am really excited about being part of CLEFT and offering a positive contribution.
Sophie Butterworth, Junior Cleft Fellow I qualified as a doctor in 2007 and have been working part-time with the cleft lip and palate team in Newcastle since 2009, with a few breaks for my three children. Expand I am a member of the cleft early career research group and have worked with the cleft multidisciplinary collaborative on several projects. I am really interested in research, and my goal at the moment is to try and investigate why speech outcomes differ in patients born with a cleft palate. I hope to be part of larger, international studies in the future as I enjoy working with others and if we can get larger numbers of patients involved in studies then we can hopefully find out more answers. I am really excited to be part of CLEFT and look forward to hearing about all the new research ideas.
Ambika Chadha I am a doubly qualified specialist in Oral & Maxillofacial Surgery who has had a lifelong interest in all aspects of cleft. Expand I am honoured to be the nominated 2022 Training Interface Group (TIG) fellow in Cleft Lip & Palate and am based in the Cleft.Net.East service in Addenbrookes hospital, Cambridge. My passion for cleft has always spanned both clinical and research domains. I am currently writing up my PhD in the applications of 3D surface imaging in cleft – work that has been supported by both Surgical and Dental Royal College of Surgeons (RCS) Research Fellowships. I was also awarded a Winston Churchill Memorial Travel fellowship to spend several months in the 3D Facial Research Imaging Group based in Radboud University, Nijmegen, The Netherlands. I am especially interested in the use of 3D and 4D imaging to deep phenotype cleft lip and the application of Explainable Artificial Intelligence (X-AI) to enhance cleft care. Additionally, I believe that Virtual Reality (VR) and Augmented Reality (AR) technologies are poised to play an important role in disseminating clinical knowledge in cleft globally. I wholly support the CLEFT charity’s research ethos and applaud the important role it plays in supporting high quality research in cleft, in collaboration with other national organisations.
Gillian McCarthy I represent CLAPA, the Cleft Lip and Palate Association. Expand I am a qualified Speech and Language Therapist and following a career break to start a family I started working at CLAPA in 2014. I am currently the External Engagement Coordinator where I have responsibility for ensuring the Patient Voice is heard at various levels of cleft care and cleft.
Jenny Cropper I am a Clinical Psychologist working in the Spires Cleft Centre, across the Oxford and Salisbury sites. Expand I joined the team in 2020 and am the lead psychologist for cleft, craniofacial and facial palsy services at the John Radcliffe Hospital in Oxford. I have worked at the interface of physical health and emotional well-being for the past 18 years including within surgical multidisciplinary teams. I have a background in research and hope to bring this experience to my role within Cleft. I am interested to make more links within cleft and hear about new project ideas, particularly those that will improve the lived experience of those born with a cleft and their families.