Our team is a multidisciplinary UK national alliance of doctors who are collaborating with researchers in America and Europe.
Dr Ramesh Bulusu - Our Clinical Lead
Consultant Clinical Oncologist MD, MRCP, MSc, FRCR (Oncology)
Dr Bulusu is the alliance lead and one of the national experts on gastrointestinal stromal tumours (GIST). Working with other specialists in this area, he has developed the national guidelines for the management of this tumour and has lectured, presented and published extensively on the subject.
He is actively involved in numerous clinical trials as a principal and co investigator and has been the consultant clinical lead for PAWS-GIST since its inception in November 2010.
Professor Eamonn Maher
Professor of Medical Genetics and Genomic Medicine and Head of the Department of Medical Genetics.
Prior to taking up this post in 2013, Eamonn Maher was Professor of Medical Genetics and Academic Lead for the Centre for Rare Diseases and Personalised Medicine at the University of Birmingham. Eamonn has published around 400 research papers in scientific journals as well as reviews and book chapters in the fields of cancer genetics, human developmental genetics, epigenetics and genomic imprinting. He has a particular interest in research training for clinician and non-clinician scientists and had supervised more than 25 PhD or MD students to completion. Current research in Eamonn’s group relates to the molecular basis of inherited forms of renal cell carcinoma (supported by an ERC Advanced Researcher Award 2013-2018), phaeochromocytoma, multiple primary cancers, genomic imprinting disorders (www.ingenium-itn.eu) and developmental disorders.
Dr Olivier Giger
MD, PhD, University Lecturer and Honorary NHS Consultant
Dr Giger completed his medical and speciality training in Switzerland and was awarded an MD at the Univeristy of Zurich. He received a PhD from the University of Liverpool for his research on epigenetic changes in the tumour stroma. He is now a University Lecturer and Honorary Consultant in Molecular- and Histopathology working in the Department of Pathology and the Haematopathology & Oncology Diagnostic Service (HODS) at Addenbrookes’ University Hospital in Cambridge.His area of expertise lies in gastrointestinal pathology and molecular pathology of solid tumours. His research interests include the tumourmicroenvironment, gastrointestinal stromal tumours and colorectal cancer. He also enjoys teaching undergraduate and postgraduate students.
Dr Ruth Casey
Dr Casey is a consultant in Endocrinology at Cambridge University NHS Foundation Trust. Dr Casey has a specialist clinical interest in hereditary endocrine neoplasia and endocrine cancer. Her research has focused mainly on the role of succinate dehydrogenase gene mutations in tumorigenesis and has a strong translational focus. Her interest in succinate dehydrogenase deficient tumours has led to her collaboration with PAWS-GIST.
Professor Ian Judson
FRCP, Royal College of Physicians, London. MD, University of Cambridge. BA (Hons), Natural Sciences, Univesity of Cambridge. MB, BChir, University of Cambridge.
Professor Judson has specialised in the management of sarcomas for the past 20 years and has made a particular study of gastrointestinal stromal tumours (GIST). He was a principal investigator in the Phase I/II trial of imatinib for GIST in 2000/1 and has been actively involved in research into the treatment of this disease since that time.
Professor Robin Jones
Medical oncologist specialising in the treatment of bone and soft tissue sarcomas.
Professor Jones has experience in conducting Phase I, II and III trials, as well translational studies in sarcoma. He trained in medical oncology at the Royal Marsden Hospital and between 2010 and 2014 he was Head of the Sarcoma Program at the University of Washington / Fred Hutchinson Cancer Research Center in Seattle. His main research interest focuses on clinical trials of novel agents and immunotherapy in sarcoma.
Dr Charlotte Benson
Consultant Medical Oncologist working at the Royal Marsden Hospital Sarcoma unit.
Dr Benson specialises solely in the treatment of Soft tissue Sarcoma and GIST. She is active in research and is a member of the EORTC Soft Tissue Sarcoma and Bone group and the NCRI Sarcoma CSG.
Dr Palma Dileo
Consultant Medical Oncologist
Dr Palma Dileo is Consultant Medical Oncologist on the Sarcoma Unit at University College Hospital, UCLH NHS Trust, specialising exclusively in the management (chemotherapy and radiotherapy) of soft tissue and bone sarcomas. The Sarcoma Unit at UCLH, together with the Sarcoma Unit at the Royal National Orthopaedic Hospital, is the London Sarcoma Service (www.londonsarcoma.org) which offers a comprehensive clinical service to patients of all ages with sarcoma at all sites of the body. She has continued to provide patient care since 1996 (general oncology), with more emphasis on sarcoma and rare tumors starting from 1998.
Dr Dileo completed her training at the Istituto Nazionale Tumori of Milan, Italy and at Dana-Farber Cancer Institute, Boston, USA. From 2006 to 2010 she has been Associate Physician, Medical Oncology, Istituto Nazionale Tumori, Milan working in the Sarcoma Team. She has a strong interest in early phase clinical trials and is a co-investigator for a number of clinical trials in sarcoma, and is a member of the EORTC Soft Tissue and Bone Sarcoma Group and ASCO.
Dr Nicholas Carroll
Consultant Radiologist and Endoscopist, Addenbrooke's Hospital NHS Trust, Cambridge
Special clinical interests: Gastro-intestinal imaging and Endoscopic Ultrasound
- Member of the European Society of Gastro-intestinal and Abdominal Imaging
- Fellow of the Royal College of Radiologists
- Pioneered the development and use of EUS in the eastern region of the UK and currently secretary of the national EUS body.
Mr Richard Hardwick
Specialist Upper Gastro-Intestinal Tract Surgeon
Specialist upper gastro-intestinal tract surgeon with an interest in keyhole and hiatus hernia surgery and gastric and oesophageal cancer. Lead clinician for upper GI cancer at the Cambridge Oesophago-Gastric Centre, which he co-founded in 2001, lead for the National Oesophago-Gastric Cancer Audit and past chairman of the Association of Upper GI Surgeons Audit and Clinical Services Committee. Research interests include early diagnosis of upper GI cancer, Barrett's oesophagus and hereditary forms of stomach cancer. A vociferous campaigner for improved NHS resources.
Dr Phillippe Tanniere
Consultant in Histopathology
Dr Phillippe Tanniere Consultant in Histopathology at the Queen Elizabeth Hospital and Honorary Senior Lecturer at the Medical School, Birmingham, with a special interest in gastro-intestinal and pancreatico-biliary pathology.
Mr Myles Smith
Consultant Surgical Oncologist & General Surgeon MB BCh BAO (NUIG, Ireland), PhD (UCC, Ireland, FRCSI
Mr Smith works in the Sarcoma Unit and Skin Unit at The Royal Marsden. He has a special interest in surgery for soft tissue sarcomas such as GIST and an interest in the application of minimally invasive surgery to the management of rare cancers such as PAWS-GIST.
Emeritus Professor Andrew Hall
MBBS, MRCP, PhD, FRCPath
- Retired Director, Northern Institute for Cancer Research
- Retired Director, Newcastle Biomedicine Biobank
- Designated Individual for Human Tissue Act Research Licence for Newcastle University
- Professor of Experimental Haematology
- Honorary Consultant Haematologist, Newcastle upon Tyne NHS Foundation Trust
- Pathology Lead, NCRI Confederation of Cancer Biobanks
Professor Hall has been instrumental in setting up of the National GIST tumour bank.
Dr Newton Wong
Consultant Histopathologist - BSc MRCP , MBChB, FRCPath, MD
Areas of interest:
- Molecular diagnostics;
- Gastrointestinal pathology;
Dr Henry Daebritz
Clinical Research Scientist
Dr Däbritz currently works as a Clinical Research Scientist at the Cancer Metabolism Research Unit, CRUK Beatson Institute, Glasgow. His research focusses on tumours with tricarboxylic acid cycle enzyme dysfunction and on identification of metabolic biomarkers of cancer. This research led to his collaboration with PAWS-GIST.
Dr Karen Sisley
BSc, PhD, Senior Lecturer in the Department of Oncology & Metabolism, The Medical School, Sheffield
Dr Sisley is a Senior Lecturer in the Department of Oncology & Metabolism, The Medical School, Sheffield. Her research interests include investigating the genetic characterization of sarcoma and developing a molecular pathological classification suitable for all subtypes sarcomas. Karen has established the Rare Tumour Research Group (RTRG) to allow cross fertilization of ideas and the development of strong working associations supporting all researchers working with her and has been working with the PAWS-GIST team deriving, maintaining and characterising cell lines from biopsies of PAWS-GIST.
Dr Fiona McRonald
Genomics Programme Manager, National Disease Registration Service, Public Health England - BMedSc, PGDip (Genomic Medicine), MSc, PhD
Fiona is a scientist specialising in cancer genetics. She undertook her scientific qualifications at the Universities of Birmingham and Liverpool, and trained as a genetic counsellor at St. Mary’s Hospital / Manchester University. Fiona has diverse experience in academic medical research, covering a broad range of areas in clinical trials, laboratory-based science, and qualitative and psychosocial fields.
Fiona joined Public Health England in July 2015, to develop a new workstream focusing on genetics, genomics and molecular diagnostics data. Her work spans both the National Cancer Registration and Analysis Service (NCRAS) and the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS).
Supporting / Associate Bodies & Individuals
- GIST Cancer UK: Life President - Judith Robinson, Chair - Nic Puntis
- SPAEN - Sarcoma Patients Euronet: Roger Wilson & Marcus Wartenburg
- Paediatric & Wild-type GIST Clinic NIH Washington USA: Dr Lee Henman - Pediatric Oncologist, Scientific Director of Clinical Washington DC
- SDH deficient GIST Consortium
- Rare Cancers Europe
PAWS-GIST Patient Director
When Jayne's 15 year old daughter Eve was diagnosed with Paediatric/Wild-type of GIST it was the worst news her family had ever received. Very little was known/available to patients with this diagnosis in the UK.
In June 2010 Jayne & Eve attended the Paediatric, Wild-type GIST Clinic in Washington DC, hosted by Dr Su Young Kim and Dr Lee Helman. Inspired, Jayne felt determined that UK patients should also have this facility.
Encouraged by GIST Cancer UK, with fundraising from families, friends, supporters and with the dedication of Dr Ramesh Bulusu, a specialist clinic for Paediatric, Adolescent, Wild-type and Syndromic GIST patients was opened in the UK.
Essential bi-products of this initiative have been the establishment of the National GIST Tissue Bank and the National GIST registry in the UK, stimulation of GIST research projects and support of GIST clinical trials.
Eve tragically lost her battle with this monster disease aged only twenty-three.
As Patient Director of PAWS-GIST Jayne works to improve understanding of this disease, identify specific/effective treatments and improve the outcomes for all GIST patients. Jayne believes that the only satisfactory result for GIST and PAWS-GIST cancer is a cure.
Vicky Rockingham - MBE
“I was diagnosed with Wild-type GIST, SDH deficient, following an emergency operation in 2007; I was 35 yrs old with two very young children. I’ve been living with Wild-type GIST and raising funds for PAWS-GIST since 2012; I attended the first clinic, and I’ve attended a number of clinics since. The opportunities that the clinics offer, in terms of spending time with specialists and meeting patients with a similar diagnosis, are incredibly beneficial. I volunteer to help PAWS-GIST as their incredible work advances us closer to finding a cure”.
“"I have attended several PAWS-GIST clinics and have benefitted immensely each time from the impressive expertise and patience of everyone involved.
These days I provide ad-hoc support to the PAWS-GIST team on various topics around online fundraising platforms and data analysis." .
Charlie Hamilton James
Patron. Wildlife Photographer and television presenter.