About CHECT research
Research is a vital part of the fight against retinoblastoma. Our aim is to support world class research that will improve our understanding of Rb as well as clinical research into effective treatments and reducing the negative impact on those affected.
While the annual grant round provides the main stream of CHECT funding for research, we may from time to time decide to award further grants or consider applications outside of this round. We will also consider proposals to co-fund projects in partnership with other funding bodies. In these circumstances appropriate peer review process will be applied. We are a member of the Association of Medical Research Charities (AMRC). All AMRC members support the AMRC position statement on the use of animals in research.
Scientific Advisory Committee
While the CHECT trustees are ultimately responsible for the research strategy and grant awarding of the charity, a CHECT Scientific Advisory Committee (SAC) exists to assist the CHECT trustees in these responsibilities. The committee members are:
Dr Lorna Fraser (Chair)
I am a trustee of CHECT and a survivor of bilateral retinoblastoma having had one eye removed and radiotherapy on the other in 1979.
I initially trained as a Paediatrician, graduating from the University of Aberdeen’s medical school in 1999 and becoming a member of the Royal College of Paediatrics and Child Health in 2002. I then changed career path and completed a PhD from the School of Geography at the University of Leeds in 2012.
I now work as a Senior Lecturer in Paediatric Epidemiology at the University of York and I am the director of the Martin House Research Centre. My main topic area is chronic and life-limiting conditions in childhood and the use of routinely collected data in research. I have had or currently hold research grants from the major funders in the UK including the NIHR and MRC as well as charity grants. I am also a member of the Health Research Authorities Confidentiality Advice Group.
Dr Dimitra Athanasiou
I am a research associate at UCL Institute of Ophthalmology. My main research interests focus on investigating the molecular mechanisms underlying neurodegenerative diseases. The understanding of how neurons maintain proteostasis – which is the balance of protein synthesis, folding, traffic and degradation – can provide insight into how we can intervene in the cell stress machinery when proteostasis imbalances are present, a common feature in neurodegeneration. I have been working on mutations causing inherited retinal degeneration and their effect on retinal cell viability for more than ten years. By targeting pathways involved in proteostasis, I have tested different therapeutic approaches for rhodopsin retinitis pigmentosa, which has deepened our understanding on photoreceptor biology in health and disease. I aim to bring my expertise on retinal cell biology research to CHECT’s SAC and help support good quality research on retinoblastoma.
Mr Manoj Parulekar
I am a paediatric ophthalmologist at Birmingham Children’s Hospital, one of the two national treatment centres for retinoblastoma. I work as part of a multidisciplinary retinoblastoma team, and also have a wider paediatric ophthalmology practice, with special interest in reconstructive surgery following enucleation, and radiotherapy.
I contribute to an active research programme, both basic science as well as clinical, and contribute to several learned bodies including the International RB Staging Committee. I hope to bring this experience to my role of assisting the SAC and trustees to achieve CHECT’s research goals.
Iain joined the SAC as a lay member in 2015. A PhD student researching nineteenth century UK social politics, Iain has previously worked on community leadership and faith-based social action in Wolverhampton and Telford. Over the last four years he has been based in Gloucester focused on developing the Voice of Disabled People through leadership skills in Gloucestershire and studying for an MA in History with the Open University. Having had Rb as a child, Iain is now an active member of the Beyond Rb adult survivors group.
Dr Robert Henderson
I work as a paediatric ophthalmologist and retinal surgeon having trained at the Hospital for Sick Children, Toronto; the Royal Victorian Eye & Ear Hospital in Melbourne; and Moorfields Eye Hospital in London. I am now a consultant based at Moorfields and Great Ormond Street Hospital for Children and am also an honorary Senior Lecturer at the UCL Institute of Child Health. My research background has been in the genetics of inherited retinal disease and I am actively involved now with research into the causes of childhood onset retinal dystrophies and retinovascular diseases, with an interest in novel therapies. I am involved with clinical, basic science, and translational research programmes looking at causes of, and treatments for, inherited retinal disease.
Dr Jennie Robertson
I’m a Clinical Psychologist working in the Paediatric Liaison Team (PLT) at the Royal London Hospital. As part of my role, I spend two days a week with the Retinoblastoma Service. This involves assessing children and their families for psychological distress, and providing 1:1 support or facilitating referrals to local services. I also co-facilitate Sib Squad (a group for siblings of children living with cancer), and run a group for children, young people and their carers affected by chronic illness (which has been accessed by several Rb families). I also do a significant amount of liaison and joint-working with other professionals within the hospital, as well as with outside agencies including schools, charities and Social Care. Another part of my role is running a fortnightly psychosocial meeting in which the psycho-social needs of Rb patients are discussed by the multi-disciplinary team. I feel very fortunate to be the only psychologist running a dedicated Rb service in the UK, and to be part of such a fantastic team.
Dr Jed Stevenson
I am a medical anthropologist with research interests in child development across cultures. My work centres on Africa – especially Ethiopia and Congo – and much of it is carried out in collaboration with charities promoting community health. I am currently teaching fellow in Medical Anthropology at University College London, and adjunct assistant professor in the Rollins School of Public Health at Emory University (USA). I also have experience of raising a child with retinoblastoma, and am a trustee of CHECT.
Dr Audrey Bonaventure
I am a physician specialist in public health and also trained as an epidemiologist, currently a Visiting Senior Research Fellow in the Department of Health Sciences of the University of York. Since 2008, I have developed a particular expertise in several aspects of childhood cancer epidemiology, from exploring survival inequalities to searching for risk (or protective) factors for childhood cancer, including retinoblastoma. I have worked in France and in the UK, where I had the opportunity to teach epidemiological methods to international students for several years.
I am deeply honoured to have been asked to join the CHECT SAC, to which I will contribute my experience in public health and epidemiology.
Dr Sunyama Best
I am a Clinical Genetics registrar based in Leeds. I completed an intercalated BSc in Human Genetics within my medical degree at University College London. I followed an academic training pathway after graduating, with an Academic Foundation Programme post in Clinical Genetics and an Academic Clinical Fellowship in Paediatrics, both at Imperial College London. I completed an MSc in Genomic Medicine, also at Imperial, in 2016. I have recently begun a Wellcome PhD Fellowship at the University of Leeds. My project is in trying to improve strategies to interpret genetic variants for patients with ciliopathies and inherited retinal diseases. I have particular clinical interests in eye genetics, paediatrics and prenatal genetics. I am excited by potential of genomics to inform basic science and improve molecular diagnosis rates for patients, and hope it provides means to offer increasingly targeted therapies in the future. I am honoured to be asked to join the CHECT SAC and hope to contribute to the group with my experience in research, paediatrics and eye genetics.
I am an electronic engineer who has been working on financial analytics for more than 20 years. Originally from Italy, I moved to Dublin and Paris to study for a PhD in Computer Science. I then moved to London where I have been living since 1998. I am married and have two very active sons who are 7 and 9 and who love the CHECT weekends and activities. They keep asking me when the next CHECT weekend will be!
Although I have known CHECT for several years thanks to their incisive online campaigns, I always remained a spectator before joining the Board of Trustees in January 2015, applying my software experience and scientific skills to the benefits of CHECT. Since November 2018 I have also become part of the Scientific Advisory Committee.