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.
Janette Hollingbery I think CLEFT is a wonderful charity because I know it has such an impact on people’s lives. Expand CLEFT is important to me because it is researching the causes of and cures for CLEFT. One of our children was born with a cleft lip, so we would find it interesting to know more about what caused it. In some countries the access to cleft repairs is limited and so CLEFT is helping to train up doctors and to supply equipment to help out people who would otherwise be outcasts in their society. I have been inspired by the work of Mr Brian Sommerlad, who helped to start up CLEFT, and was happy to get involved. I have been a Trustee for a few charities so I know how difficult it is for small charities like CLEFT to raise money. I have a background in working with small businesses and various types of charities, so I try to contribute where I can. I split my time between London and Hampshire, which I can do now that all our three children are adults. I grew up in the USA and have lived in Britain half my life,. I can see the value of a National Health system, and supporting valuable research and those less fortunate. I have a an MBA from the Wharton Business school at the University of Pennsylvania and BA in economics from George Washington University.
Rory Walker I'm a father of four young kids and a husband to Becky and I live in Surrey along with our hoard of dogs, cats, chickens and gerbils! Expand In my working life I run a safari tour operator, specialising in organising trips of a lifetime to 'Safari Africa'. I first became involved with CLEFT after our eldest son, Jack, was born with a bilateral Cleft lip and palate. Brian Sommerlad was Jack's surgeon and he introduced us to CLEFT and the amazing work the charity does. Despite being the world's most common birth defects, clefts are still an area that are not fully understood and require a lot more charitable funding. Having gone through our experiences with Jack, and being lucky enough to live in country where he was easily treated, we feel compelled to try and help people in less fortunate positions around the world. Unlike many other larger cleft charities, CLEFT focuses on both research into improving our understanding of clefts as well as helping people in under-privileged countries. CLEFT also focuses on establishing sustainable cleft practices overseas and unlike the larger charities keeps administration costs very low. As a trustee I share the responsibility with the other trustees to ensure the charity is run in a effective and efficient way. As a business owner I am involved in the many aspects of running a business, many of which relate to running a charity. As a father of a son with a cleft I also add a personal element as well.
Andrew Steel In CLEFT I saw a unique opportunity to support people looking for ways to improve not only the lives of cleft patients and their families in the UK, but also to create significant and sustainable improvements for those in poorer countries where little or no care is available, and outcomes are often dramatically different. Expand My third eldest daughter Alanna was born with a cleft palate, and has been cared for by the GOSH and Salisbury Cleft teams since she was born in 2003. As the parent of a child with a cleft, I was also keen to help support research into the causes of clefts, about which little is understood and which holds little / no attraction for research funding from pharmaceutical companies. I was inspired by Brian to become a trustee of the charity shortly after its foundation in 2007, becoming a CLEFT trustee from 2008 to 2011, before moving to Singapore for work, and then re-joined the trustees on my return to the UK in 2017. I am passionate about creating sustainable solutions for problems, rather than applying ‘quick fixes’ that look good but don’t last. I see CLEFT as unique in sustainably improving cleft care in poor countries by providing training and equipment for medical staff that wouldn’t otherwise be available, and by supporting overall research to investigate the underlying causes. Married with 4 daughters, I live in Hampshire and work in London and worldwide. I hold the position of Global Head of Sustainable Finance, and Head of the EMEA Corporate Ratings Group for the credit ratings agency Fitch. I have a background in investment banking, corporate fundraising for projects, mergers and acquisitions, private equity, corporate risk and advisory work. I graduated from Bristol University with a degree in Psychology and have a post-graduate diploma (CGEM) from INSEAD. To listen to Andrew Steel: A Parent's Story, please click here.
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. 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.
Jason Baldwin, CLEFT Treasurer I joined CLEFT in 2018 as a trustee and Treasurer with a passion to better understand why clefts occur through research and to help other children in the UK and abroad. Expand My son, Noah, was born with a submucous cleft palate. When confronted with this diagnosis our first thoughts were 'why us?' followed swiftly by 'how do we fix this?' Answers to these fundamental questions continued to resonate with me even after the two successful surgical procedures on his cleft to repair it. He has since spent hours in speech therapy and recently with the orthodontic department. In the UK we are fortunate to have an amazing group of dedicated surgeons and support teams to carry out world-leading procedures to correct these conditions.
Richard Allan I became aware of CLEFT through discussion with Brian Sommerlad and was invited to become a trustee. Expand I am particularly interested in the work that our charity does overseas and have travelled to Bangladesh five times. It has been enormously satisfying to see the comprehensive cleft care centre in Dhaka developing and to get to know the key people involved. Much has been achieved, but there is so much more to do.There is the prospect of establishing other centres along similar lines. Sustainability is of paramount importance and this cannot be achieved overnight. Our charity sets itself long term goals so we need to continually plan ahead. I come from a business background and have wide experience in several industries. I hold a masters degree in business administration and have chaired audit committees in a number of major organizations. Helpful when producing action plans and budgets for our overseas projects.
Tracy Morris Being married to cleft lip and palate surgeon, Mr Paul Morris, means that daily life is engulfed by everything cleft! Expand Here in the UK we are so very lucky to have such a wonderful NHS that supports families from the first scan through to adult life. The sad fact that parents from less developed countries have very little or no support medically and that their wider family and villagers often ostracise cleft children is heart breaking. My passion for the CLEFT charity has grown as I have become more aware of the amazing work it undertakes worldwide and the positive impact it has on so many lives. The charity touches the lives of less fortunate families through local surgery, training and education; and here in the UK through our funded grassroots research programmes. Reading the stories on our website highlights its effectiveness. I regularly attend the trustee meetings, work closely with our Student Ambassadors and promote the charity at every opportunity, I have run (and walked) the London Parks half marathon 3 times, I have cycled the London Prudential 100 miles cycle ride 3 times and climbed Kilimanjaro in 2019 in aid of CLEFT (read my story here).
Kaye Knowles I live in West London with my husband, Peter. We have two sons, David & Andrew. Expand My career has included many years as a professional violinist (BBC Philharmonic, Bridge String Quartet) and as a violin then classroom teacher. I'm currently Head of Music at Gumley House School FCJ and also teach Dalcroze Eurhythmics at the Guildhall School of Music and Drama. I was born with a cleft lip and palate and first encountered CLEFT runners in 2014 at the Royal Parks Half Marathon. That year I ran for Great Ormond Street Hospital charity, which is where I received my treatment. This included over a dozen operations. In the following year, 2015, I decided to raise money for CLEFT. I then volunteered to run the Uganda Marathon in 2016 and raised over £2,000 for the charity. I am keenly aware of how privileged I am to have had my cleft repaired by the very best surgeons and how this has allowed me to lead a normal life! My experience in Uganda was a sharp reminder of what can happen when superstition and lack of education are the norm. I have been moved at how cleft charities have literally given people the opportunity to have a life.
Yul Kahn-Pascual I am a medical student at University College London and have been a trustee since 2018. Expand I love playing and watching sport, and spend most of my free time on a court either playing tennis, rackets or fives. I first joined CLEFT in 2017 as a student ambassador to raise awareness about some of the challenges faced in developing countries. At the same time, I was completing my BSc project which investigated the global disparity in access to safe cleft surgery. Children born with a cleft in resource-limited countries often receive surgery much later than in the UK, if at all, and have extremely limited access to other important aspects of treatment, such as speech and language therapy, or even post-surgery follow ups. During my BSc research project, I came across CLEFT’s overseas contributions in resource-limited countries and admired their commitment to providing a more sustainable solution to the disparity in both access, quality and follow up of surgery, as well as the way they uphold the multidisciplinary team approach, which we are fortunate to have in the UK. This ensures functional aspects such as speech and feeding are also addressed. What makes CLEFT unique to me is how it sets high goals for cleft care standards overseas by reducing the reliance on just visiting surgeons, and contributing to prospect of improved cleft care for these regions in the future. I am passionate about CLEFT's commitment to expanding the evidence base around treatment through research, and its effort to bridge the gap between UK and overseas in order to begin building more comprehensive cleft care access for the future. If you would like to listen to a short video of Yul explaining why he became a trustee, please click here.
Rosie O'Malley I am a busy working mum of 3 (plus dog). Expand Life keeps me busy, yoga keeps me sane. Running is my head space and netball lets out my inner competitive spirit. I love to travel and to learn about how people live in different parts of the world (that’s my inner geographer). A good book or the National Geographic would be my nightly wind down (I’m in that small % of the population who have never watched a box set of anything, or a Netflix series). I enjoy cooking and exploring new foods when time allows! I have been a CLEFT trustee for around 5 years. My working background is 21 years in Marketing and Strategy roles in Unilever - covering local, European and global business on a multitude of household name brands. I loved what I did at Unilever but life needed some changes and I left in Feb 2018 to help my father managing commercial property investments. This allows me to be more flexible and give me more time and space for looking after the family, particularly my middle child who has 22q11 deletion syndrome - as part of that, she had an occult sub mucous cleft palate - she has had 2 surgeries on her cleft, Brian Sommerlad was the surgeon for the second. My husband and I met Brian at a 22q11 conference and that was where I learnt about CLEFT the charity and Brian’s own work and research. I hate the idea of people being ostracised because of having clefts, therefore I feel the work we are doing in Bangladesh etc is so important. I also feel that finding ways to bring scientific research to people whose lives it could actually help, is essential. This sums up CLEFT as opposed to other cleft related charities - it’s the balance of helping those in poorer countries than our own and the funding of essential research to better the care over the longer term - which I think is just a perfect blend. To hear more about Rosie, please click here to listen to A mother's story.
Matt Fell I am excited to work with the CLEFT charity team, as part of the UK’s collaborative effort, to help improve cleft care in the UK and overseas. Expand I am excited to work with the CLEFT charity team, as part of the UK’s collaborative effort, to help improve cleft care in the UK and overseas. I am a Plastic and Reconstructive Surgery training registrar in the Southwest of England, based in Bristol with my wife and two children. I have been fascinated in cleft lip and palate since being a medical student and have steered my surgical training towards achieving my goal of becoming a cleft surgeon. I have an honorary fellowship position to perform epidemiological cleft research with the Cleft Collective at the University of Bristol. I have been passionate about global health for many years and aim to focus my energy on improving the provision of cleft care for patients and their families living in resource-poor settings. If you would like to listen to Matt examining the problems of inequalities in access to cleft care in lower income countries, please click here.
Bruce Richard Consultant Cleft Surgeon (retired). Expand I lived in in Nepal for 11 years, (1989-1999) where I set up a Plastic Surgery Department for the Government of Nepal, trained 7 Nepalese surgeons in Plastic Surgery, initiated a Randomised controlled trial in Cleft surgery, and investigated the facial nerve in leprosy. My passion was working with Nepalese colleagues to improve outcomes for the people of West Nepal. For the last 19 years, I have been a Consultant Cleft surgeon in Birmingham, developing the cleft service, teaching Plastic surgery, supporting national Cleft Audit, and initiating several cleft clinical research projects. I continue with 2 PhD students that I co-supervise on computer artificial Intelligence projects developing a better cleft aesthetic outcome measure and investigating why some children’s midface does not grow sop well after cleft surgery. The CLEFT International Charity objectives, completely encapsulates my passion for development and sustainability of improved Cleft care in Low and Middle Income Countries by the ethos and methodology stated in the Mission Statement. I would like to help those objectives become more of a reality. If you would like to hear more from Bruce about his experiences of working and living in Nepal, please click here.
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.
David Sainsbury I am delighted to be a Trustee of CLEFT and am very enthusiastic at the prospect of helping teams around the world to provide the best possible care for individuals with a cleft. Expand I am a Consultant Cleft and Plastic Surgeon in Newcastle upon Tyne – where I live with my wife and three children. I trained in plastic surgery in North-East England and completed Advanced Training in Cleft Lip and Palate (Newcastle, Leeds, Nottingham, Edinburgh) and the Paediatric Plastic Surgery Fellowship (Hospital for Sick Children, Toronto). I am a founder member of the Cleft Multidisciplinary Collaborative which produces multicentre, cleft related research across the UK and beyond. I am an Honorary Tutor at the Wound Healing Research Unit, Cardiff University.