All members of the Board of Trustees carry out their duties on a voluntary basis and in accordance with the Gorlin Syndrome Group Constitution.
Trustees give their time to the efficient administration of the charity and the fulfilment of its trusts.
Membership of the Gorlin Syndrome Group Executive Committee is open to any person over the age of 18 years of age interested in furthering the objects. All members hold office for a period of 3 years but they may be re-elected or appointed. Current Trustees are:
Sally Webster – Chair
Sally entered nurse training in 1973 and qualified as a nurse in 1976. After further training she worked within the community as a Health Visitor. Further studies included BSC Honours and Post Graduate Diploma in Health Care Studies whilst specialising as Immunisation Advisor, finally retiring as Head Of Health Protection for NHS Manchester in 2011 following 38 years service in the NHS. Sally is married with three children aged, 16, 18 and 32 years. Family and friend time is very important and much time is spent socialising together. Retirement has provided the opportunity to undertake voluntary within the local church and community. Hobbiles include, gardening, music, cooking and walking.
Diagnosed later in life with Gorlin Syndrome in 1995, Sally met Margaret and Jim Costello founder members of the UK Gorlin Syndrome Group and had the privelege of serving as Vice Chair to Jim until his untimely death related to Gorlin Syndome in 2002. Since Jim’s death Sally has served as Chair working closely with Margaret and the other trustees to raise awareness of Gorlin Syndrome.
Margaret Costello – Secretary and Co Founder
Margaret is co-founder and Secretary of the Gorlin Syndrome Group in the UK. The group was formed in 1992 by her late husband Jim. Jim was affected by the condition and since his premature death in 2002 Margaret has continued to work on a voluntary basis, supported by fellow Trustees and Medical Advisors.
Margaret has three children, Jane, Helen and Richard. Her third child Anna died at the at of 5 ½ months, Gorlin Syndrome related, in 1981.Despite numerous surgeries and treatments for basal cell carcinomas over an 11 year period Jim’s diagnosis and that of her two elder daughters came following Anna’s death. On leaving school Margaret worked in banking and finance for a number of years before going on to qualify as a youth worker. In March 2010 Margaret took voluntary redundancy and early retirement following almost 20 years service working for the National Probation Service in Lancashire in a variety of roles. Following a six month break Margaret returned to work on a part time basis in the third sector supporting ex-offenders in the community. During her working life Margaret gain a number of qualifications, NVQ Leve 4 in Adminstration, ILM Level 3 in Management and a qaulification in Community Justice. Margaret’s hobbies include reading, swimming, walking and gardening. Margaret has a keen interest in all sports, however, her greatest joy is spending time with friends, family and her grandaughter Aimee.
Jane joined the Gorlin Syndrome Group committee in November 2012, in memory of her dad, Jim who died in 2002, at the age of 51, after setting up the support group some years before. As a Gorlin patient, Jane appreciates the information, support and friendship which she has found within the group.
After obtaining a Bsc (Hons) in Boimedical Science from the University of Central Lancashire in 1999, Jane has worked in the Pharmaceutical industry, currently in the role of Senior Drug Safety Associate in Pharmacovigilance at Johnson & Johnson. Jane lives happily in Buckinghamshire with partner Paul and their beautiful daughter Aimee. Due to working full time, every moment spent with Paul, Aimee and my family back in Preston in precious. In my spare time, I also enjoy watching football (at the moment my adopted team, Wycombe Wanderes), listening to music and when we can, babysitters permitting … going out and socialising! Jane looks forward to meeting as many Gorlin patients as possible during her time on the Gorlin Syndrome Group committee.
John Dooher – Treasurer
John spent 28 years in Local Government Bereavement Services (Cemeteries and Crematoria) in Chesterfield, High Wycombe, Doncaster and Leicester. John took early retirement to allotment (Chairman and Whitehouse Allotments) and beer and skittles. Retired Local Govt. Manager aged 69, living in Leicester. Married Dot who has Gorlin Syndrome. John and Dot have three grown up children. John has been involved with the group since 1871 or thereabouts as Trustee, Treasurer and de facto IT manager.
Robert is married to Sally who is currently serving as Chair of the Gorlin Syndrome Group in the UK. Robert is not effected by Gorlin and whilst supporting Sally in her treatments and activities following her discovery of the symptoms in 1995 only became actively involved in supporting the group 3 years ago.
Robert joined the Nat West Bank upon leaving school in 1974. He completed his Banking exams in 1978 and has worked in and around Manchester throughout his career. Robert has always worked in Branch banking dealing with customers on a face to face basis each day. He was manager at the Sale branch looking after a team of 20 staff before his retirement in 2015.
Outside of family (Anthony, Matthew and Rebecca) his main interests are football (Liverpool and previously running a team for 20 years) film, music and any kind of exercise.
Helen, like her sister Jane became a trustee of the Gorlin Syndrome Group in memory of her dad and to honour the work he did to set up and support individuals with Gorlin Syndrome. As a Gorlin Syndrome patient Helen appreciates the challenges the condition and treatments bring and is keen to take forward the work of the group. Helen lives with her long term partner Dave on the outskirts of Preston. Both are keen football fans and love nothing more than attending matches and supporting their local team Preston North End at Deepdale.
Published on: 17 Jul 2009
I was diagnosed with Gorlin Syndrome when I was in my late thirties, by which time I’d already had about 20 basal cell cancers removed. In the 20 years since then, I’ve had one or two operations per year for BCCs. I’ve had back problems and one leg is shorter than the other, but apart from that, I haven’t had any other problems to do with Gorlin Syndrome.
I have a new mutation, so no one else in my family is affected. This is good because most of my family live overseas in sunny countries.
In becoming a Trustee I’m very keen to highlight the psychological needs of people with Gorlin Syndrome. Although I’m usually fairly happy go lucky, I can get very down and tearful when I have surgery. I think it’s important that we acknowledge the impact of Gorlin Syndrome on our moods and also that our doctors and nurses take how we feel into account. I’m also very keen that people with Gorlin Syndrome can have access to and make the most of some the great new treatments becoming available. To do this, we need to take part in clinical trials. I’m really encouraged to see that this is beginning to happen.
I worked as a doctor until I retired a couple of years ago and live in the North of England with my husband, Antonio. Since I retired, I’ve enjoyed having more time to enjoy our beautiful countryside and I’m also trying to develop some skills as a portraitist.