The charity trustees include 3 parent representatives and 3 clinicians with an interest and involvement in FA.
“In accepting the role of Patron of the Fanconi Hope Charitable Trust I believe that this small charity can have a big impact on many lives. I have been impressed with the passion and drive of the Trustees and I, too, share this passion. Of course it is not enough to simply believe we will make a difference, and the charity cannot change anything without receiving the full support of those impacted by Fanconi Anaemia. I would encourage all who want to change the lives of those affected by Fanconi Anaemia to unite together behind this charitable cause. There are so many stories about this terrible condition that one cannot help but be moved – often saddened, and it is incumbent on all of us to work together to give hope to those suffering because of Fanconi Anaemia.”
The Duchess of Devonshire DL
Meet the Team
Consultant Oncologist and FA Researcher, Manchester.
Stefan works as an Honorary Consultant Paediatric Oncologist at the Royal Manchester Children’s Hospital, where he also leads the multidisciplinary care for children with Fanconi Anaemia, and the Young Oncology unit at the Christie Hospital.
Graduated in Medicine in Hamburg, Germany. MD University of Hamburg. Basic Paediatric training in Lubeck, Germany, and Manchester. MRCP/MRCPH(UK) 1995. Higher Specialist Training in Paediatrics and Paediatric Oncology in Manchester. Leukaemia Lymphoma Research Clinical Research Fellow 2000 – 2004, Paediatric Oncology, Manchester. PhD 2004, University of Manchester. CRUK Clinician Scientist 2005 -2010, University of Manchester.
Since 2010 Senior Lecturer / Honorary Consultant Paediatric Oncologist, Stem Cell and Leukaemia Proteomics Laboratory and clinically in the Department of Paediatric and Adolescent Oncology of the University of Manchester at Royal Manchester Children’s and Christie Hospitals.
Dr Josu de la Fuente is a leading Consultant Paediatric Haematologist working both in the NHS and the private sector in London. He is the Clinical Lead for Paediatric Specialties at Imperial College Healthcare NHS Trust, where he directs the Blood and Marrow Transplantation Programme and leads the Service of Paediatric Haematology. He is a Senior Lecturer in Haematology at Imperial College London.
Dr Josu de la Fuente is a Fellow of the Royal College of Physicians of London, the Royal College of Physicians of Ireland, the Royal College of Paediatrics and Child Health and the Royal College of Pathologists, reflecting his expertise in haematology and paediatrics. He is a member of the British Society for Haematology, the American Society of Haematology, the American Society of Paediatric Haematology/Oncology, the American Society of Blood and Marrow Transplantation, the European Haematology Association and European Society for Blood and Marrow Transplantation.
Nigel is a Senior Lecturer at the Institute of Integrative Biology at the University of Liverpool. He has a BSc in Genetics/Microbiology, University of Wales Swansea (1982). PhD in cellular and molecular biology at the MRC Radiobiology Unit, Harwell (1987). Postdoctoral fellow with Dr Larry Thompson at Lawrence Livermore National Laboratory, California (USA) working on human DNA repair genes (1987-1988). Postdoctoral fellow and MRC grant holder with Profs. James Parry and Ray Waters, Swansea University working on DNA repair mechanisms, genetic toxicology and human biomonitoring (1989-1995). University of Liverpool (1995-present). Previous roles at UoL include programme director for Genetics for ~ 10 years.
Current teaching responsibilities include coordinator for 2nd year module LIFE208 (Molecular and Medical Genetics) and 3rd year module LIFE321 (Human and Clinical Genetics), lectures in LIFE302 (Genes and Cancer) and workshops on Genetic Toxicology in LIFE319.
Marc is a University Reader and Honorary Consultant in the Department of Medical Genetics at Cambridge. He completed his medical degree in 1993 and trained in Medical Oncology before completing his training in Medical Genetics. From 1999-2002 he undertook a PhD researching the role of Fanconi Anaemia gene mutations in the development of sporadic acute myeloid leukaemia. He held a Consultant post at Great Ormond Street Hospital before moving to McGill University, Montreal in 2005 where he worked on Faculty for six years before coming to Cambridge. Much of his research has been on the Fanconi Anaemia genes and hereditary breast cancer predisposition but his interests cover all areas of hereditary cancer and translating the recent advances in genomic technology into clinical practice.
Beth is a dedicated nurse working at The Royal Manchester Children’s Hospital with over thirty years’ experience of Haematology and Oncology. Beth especially enjoys supporting and caring for Fanconi patients and their families. She has a good understanding of the many physical, psychological and genetic issues facing families is passionate to assist families in any way she can. Beth started working for Fanconi Hope in May 2016 as Research Liaison Coordinator.
Louise is currently study Graphic Design, Photography and Psychology at 6th Form College and has been supporting the charity in its social media activities, such as Facebook, Instagram and Twitter, as well as advising on graphic design matters.
Jeannie has been supporting families and helping to organise events since the inception of the charity in 2008.
In searching for a cure for Fanconi Anaemia, Fanconi Hope recognises the need to work in a global context and is proud to be partnered informally with a number of international groups including:
The Fanconi Anemia Research Fund, Inc.
Was founded in the United States in 1989 to find effective treatments and a cure for Fanconi Anaemia and to provide education and support services to affected families worldwide.
The Association Francaise de la Maladie de Fanconi
Provides information, assistance and support to patients and their families, encourages exchanges between physicians and researchers worldwide and encourage all clinical and basic research on the disease.
Deutsche Fanconi-Anämie-Hilfe e.V organisation
The German Fanconi Anaemia Help organisation supports families not just in Germany but across Europe.