|
The first meeting of the group took place in Manchester in 1992, with five patients and their families in attendance. Over the years numbers have increased dramatically, mainly due to the accessibility of the internet and the various links we have forged with healthcare practitioners within the NHS. We are now in contact with over 350 patients and their families in the UK. Many more people from countries across the world also look to us for information about the many aspects of the condition.
We are supported by a team of Medical
Advisors comprising healthcare professionals from across a range of disciplines.
We are grateful for their continuing support.
Trustees
All members of the Board of Trustees
carry out their duties on a voluntary basis. Current members are:
Mrs Sally Webster - Chair
Mr John Dooher - Hon Treasurer
Mrs Margaret Costello - Trust
Secretary and Co Founder
Mrs Vicky Gill
Mr Robert Webster
Miss Helen Costello
Patrons:
Professor Robert Gorlin
Professor Gorlin accepted the
nomination to become Patron on visiting St Mary's Hospital, Manchester on
1st November 1994.
Professor Gorlin (now deceased) is
respected worldwide for his contributions in the fields of Clinical, Dental
and Craniofacial Genetics and has been a significant help to all those
affected the the condition which bears his name. He and Dr R W Goltz
described two patients with the syndrome, and reviewed the existing
literature in a medical article in 1960. In 1965 he reported a further 6
patients and reviewed 38 reports of the syndrome involving more than 150
individuals. Since he has written several reviews of the condition.
"We were deeply saddened to hear
the news of Professor Gorlin's death. He died on Tuesday, 29th August
2006 after a long illness. We know how hard we worked over the years
contributing to the understanding of genetic conditions, his expertise
and talent in this particular area of medicine will be sorely missed. I
know that on a personal level my late husband Jim would want me to
express the thanks of the Costello family for Bob's sterling work, his
support and friendship over the years, as would all those members of the
Gorlin Syndrome Group UK who had the pleasure of meeting him. I
know I speak for all when confirming what an honour it has been for so
many of us to be drawn together in his name".
Margaret Costello - 30.8.2006
Professor P A Farndon - Consultant
Clinical Geneticist
Professor Farndon currently holds the
post of Director at the National Genetics Education and Development Centre
in Birmingham. Peter has a long standing interest and experience in genetic
education and holds an MSc in medical education. He is a member of the
Education Committee of the European Society of Human Genetics.
Peter is Professor of Clinical
Genetics and Consultant Clinical Geneticist in Birmingham. He has been
involved with the practical application of genetics for patients for nearly
25 years, after a broad training in medicine and paediatrics. He gained an
MD for research in Gorlin syndrome, a condition which predisposes to skin
cancer. He is chair of the UK Genetic Testing Network and previous national
roles include being President of the Clinical Genetics Society.
Professor G R D Evans - Consultant in
Medical Genetics
Professor Evans is a Professor and
Consultant of Medical Genetics at the Regional Clinical Genetics Unit, St
Mary's Hospital in Manchester. He was trained at Saint Mary’s hospital
Medical School London and initially specialised in paediatrics before
training in Genetics at Saint Mary’s Manchester. He has established a
national and international reputation in clinical and research aspects of
cancer genetics, particularly in neurofibromatosis and breast cancer.
Gareth has developed a clinical
service for cancer genetics in the North West Region, which is nationally
regarded. He is an important opinion leader nationally through
membership of committees and is chairman of the NICE Familial Breast Cancer
Guideline Development Group.
| 
