Charity Trustees
Our Patron
“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
FA parent and retired business development manager involved in electronic engineering research
Now based in Edinburgh
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 retired specialist nurse who worked 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 and Registry Coordinator, and holds the post of Charity Secretary.
Dr Roshni (Ronnie) George is an FA Parent and Consultant Obstetrician & Gynacologist, Manchester University NHS Foundation Trust .
Jeannie is a founding member of Fanconi Hope and has been supporting families, helping to organise events and involved generally in the development of the charity since its inception of the charity in 2008.
Suzanne Lloyd is Personal Assistant to the Chair of Fanconi Hope, working diligently behind the scenes, ensuring all administrative tasks are up to date. As the primary point of contact for all fundraising events, she also manages our social media, sharing all our latest news and keeping everyone up to date. Suzanne works from home in Chesterfield and divides her time between a number of organisations. Initially on contract for 10 hours per month, it wasn’t long before we put this up to 15, reflecting her value to the organisation and her impact on reducing the load on the charity chairman.
If you wish to contact Suzanne please email admin@fanconihope.org.
Katie Carr volunteers as Head of Communications. We are delighted to welcome Katie Carr as Head of Communications for Fanconi Hope, a position she has held at various leading business schools and law firms. Many of you have been following her recent exploits sea kayaking the Shipping Forecast, a challenge started by her brother Toby Carr back in 2018.
You may remember Toby from our 2019 Family Conference where he gave a fascinating talk on his kayaking exploits, inspiring younger members of our FA community in the process by showing them that it was possible have FA, hold down a job and go on exciting adventures well into adulthood. When Toby died in 2022, Katie wrote the book at about his adventures that he hoped he would author. It was published as “Moderate Becoming Good Later” in June 2023.
On finishing the book, Katie decided to finish Toby’s challenge as well and has spent the last year and a half bagging the Shipping Forecast areas he did not manage to get to around Scotland, Ireland, Wales and Northeast England. She is also fundraising for Fanconi Hope in the process!
If you would like to tell Katie your story or about a part of your journey with FA please contact Katie at katie@fanconihope.org.
Louise is a graduate of Manchester Metropolitan University in Interior Architecture 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. Louise is also the UK repesentative on the Fanconi Cancer Foundation FA Adult Council.
