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Medical Advisory Board

John Dodge
PROFESSOR JOHN A. DODGE: CHAIR OF SHWACHMAN-DIAMOND SUPPORT
Born in Cardiff, and trained there as a doctor in what was then the Welsh National School of Medicine, Prof. Dodge decided soon after graduation that he wanted to be a paediatrician. His postgraduate training was acquired in Wales, London, Belfast and Boston, Massachusetts, where he knew and worked for both Dr Shwachman and Dr Diamond.

He became Senior Lecturer in Child Health in Belfast, then Reader in the University of Wales College of Medicine in Cardiff, finally crossing the Irish Sea back to Belfast in 1985 when he was appointed to the Nuffield Chair of Child Health in the Queen's University. His special clinical and research interest are in children's gastrointestinal and nutritional disorders, particularly cystic fibrosis.

In 1997 he retired and moved back to Wales, accepting an Honorary Chair in Child Health in Swansea where he continues to do some clinical and academic work. From 1997 to 1999 he was a consultant to a small pharmaceutical company in America which marketed a number of products for treating cystic fibrosis.

He has been author or editor of several books, and more than 300 other papers and reports, and has given guest lectures in Universities, and to medical and scientific organisations worldwide.

Professor Dodge has served on or chaired many public and voluntary committees both in this country and internationally. He has been an Advisor in Human Genetics to the World Health Organisation since 1988. From 1995 to 1998 he was Paediatric Vice-President of the Royal College of Physicians of London. He was made a CBE in the New Year Honours list in 1999.

He is delighted and honoured to be asked to be the first chairman of the Medical Advisory Board, and hopes that his experience will be of service to the children and families affected by Shwachman-Diamond Syndrome.

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ALAN J. WARREN
PROFESSOR OF HAEMATOLOGY, UNIVERSITY OF CAMBRIDGE BASED AT THE MRC LABORATORY OF MOLECULAR BIOLOGY
I currently head a small research group of six people investigating the molecular basis of leukaemia.
I obtained my B.Sc. in Biochemistry in 1984 and qualified in Medicine in 1986 from Glasgow University. I subsequently undertook specialist training in Haematology at Ealing and Hammersmith Hospitals in London before moving to Cambridge in 1991 to undertake PhD studies at the MRC Laboratory of Molecular Biology, where I have remained to the present time. I initially undertook genetic studies to obtain insight into the function of the Lmo2 T-cell leukaemia-associated oncogene. Following a further period of clinical training, I returned to the laboratory to study the structure and function of the AML1 transcription factor, one of the most frequent targets for chromosomal rearrangements in acute leukaemia.


I was appointed as Professor of Haematology in 2003, and have responsibility at Addenbrooke’s Hospital for a specialist clinic where I care for patients with bone marrow failure syndromes, including aplastic anaemia and myelodysplasia. This clinical responsibility stimulated my research interest into the molecular basis of SDS. We combine high-resolution protein structure determination using X-ray crystallography and NMR techniques with biochemical and genetic analysis in model organisms.
I am married to Nina (a nurse) and have two children aged 9 and 12. I am an enthusiastic collector of camellias with more than 80 different varieties in the current collection!

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DR MANDY BRYON
CONSULTANT CLINICAL PSYCHOLOGIST
JOINT HEAD OF PAEDIATRIC PSYCHOLOGY
GREAT ORMOND STREET HOSPITAL FOR CHILDREN NHS TRUST

Dr Mandy Bryon is a Consultant Clinical Psychologist and Joint Head of the Paediatric Psychology Service at Great Ormond Street Hospital for Children, London, UK. She qualified in clinical psychology in North Wales and worked there in a community service for people with learning disabilities before moving to Great Ormond Street. Mandy has worked as the psychologist for the cystic fibrosis team since February 1990 and during the course of that time she has also provided a psychology service to many of the specialties of the hospital including cardiology, gastroenterology, endocrinology, ENT, surgery and intensive care. She lectures extensively within the UK on psychosocial aspects of childhood illness, particularly cystic fibrosis, to professional and parent audiences. Mandy has presented to international audiences at cystic fibrosis conferences in Europe and North America and was an invited international guest speaker to the Australian and New Zealand Cystic Fibrosis conference in August 2001.

Mandy co-founded and co-chairs the UK Psychosocial Professionals in Cystic Fibrosis Group she organises the annual Psychosocial Aspects of Cystic Fibrosis conference and is a member of the Publications Committee of the Cystic Fibrosis Trust. Mandy has researched in many areas of the psychological impact of childhood illness, her doctoral thesis was on the impact of cystic fibrosis on sibling relationships, additional studies have been on adherence to treatment, attachment and eating disorders in cystic fibrosis. Mandy has published on several topics including sibling relationships, adherence to treatment, transition to adult services and dying, death and bereavement. Mandy maintains her clinical input to the respiratory unit and oversees the clinical psychology services to all the departments within the Cardio-Respiratory and Intensive Care services of the hospital.

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MARTIN SCHWARZ
CONSULTANT CLINICAL MOLECULAR GENETICIST
ROYAL MANCHESTER CHILDREN’S HOSPITAL.

Dr Schwarz is head of the molecular genetics laboratory at Royal Manchester Children’s Hospital where he has worked since 1982, having graduated in Botany and Genetics at University College, London after a brief but unsuccessful fling with medicine. Originally a cytogeneticist, he saw the light in 1984 and, with Dr Maurice Super, set up the DNA laboratory to begin work on cystic fibrosis, a long-standing interest of Dr Super’s. Since then, the lab has become something of a specialist cystic fibrosis lab, receiving samples from all over the UK, as well as the rest of Europe and beyond. Dr Schwarz completed his PhD in cystic fibrosis molecular genetics in 1993 and was awarded Membership of the Royal College of Pathologists in 1998. In his professional capacity, Dr Schwarz is an ‘Expert Assessor’ of the Cystic Fibrosis European Network Quality Assurance Scheme, as well as being a member of the National Quality Assurance Advisory Panel in Clinical Molecular Genetics and the Primary Ciliary Dyskinesia Medical Advisory Board.

His association with Shwachman-Diamond syndrome began with an (almost) chance encounter with Professor Dodge at a CF Meeting in Dubrovnik, where Professor Dodge approached Dr Schwarz with an offer he couldn’t refuse: to become the specialist lab for providing molecular genetic services in SDS. The reply went something like: “Only as long as it is a simple gene; not too many exons, no unusual rearrangements and definitely no pseudogenes”. When the gene was published, only the number of exons (5) fitted the requirements! Thanks to a first-class description of the gene by its author, Dr Graeme Boocock of Toronto, and to a first-class member of Dr Schwarz’s staff, Joanna Hinks, the SDS service is now up and running at Royal Manchester Children’s Hospital.

When not in the lab, Dr Schwarz can usually be found in his enormous (mostly wild) garden with his partner Geraldine and three year-old daughter Grace, or watching Manchester Rugby Club with his 13 year-old son, Alastair or doing his 11 year-old daughter Georgina’s homework. Any more spare time is spent out on various rifle ranges around the country, competing as an individual or captaining the Lancashire rifle team.


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Other board Members Include
 
Professor Allan Warren (Cambridge)
Dr Peter Dale Gastroenterologist (Royal Gwent Wales)
Dr Carol Mason Dentistry (Great Ormond Street)
Dr Jutta Koegelmeir Gastroenterologist (Great Ormond Street)
Dr Sally Kinsey Hematology (Leeds)
Dr Brenda Gibson (Yorkhill Scotland)

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