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 adminstration 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

Picture Sally WebsterSally 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

Picture Margaret CostelloMargaret 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 Costello

Picture Jane CostelloJane 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 (picture to follow)

John is currently Treasurer of the Gorlin Syndrome group.  He was born in 1949 and raised in Chesterfield.  Married to Dot who was not diagnosed with Gorlin Syndrome until the late 1990s despite multiple symptoms.  John and Dot have three grown up children.

Chequered start to career.  Then spent 28 years in Local Government Bereavement Services (Cemeteries and Crematoria) in Chesterfield, High Wycombe, Doncaster and Leicester.  John too early retirement to allotment (Chairman and Whitehouse Allotments) and beer and skittles.

Robert Webster

Picture Robert Webster

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 is currently manager of the Sale branch looking after a team of 20 staff. 

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 Costello  (profile and picture to follow)


 Originally produced by Professor P. A. Farndon, Clinical Geneticist, Jim Costello (deceased) and Margaret Costello.  We are reliant on a team of medical advisors for the clinical content of the website. We are grateful for their continuing support. 
Gorlin Syndrome Group is Registered Charity in the UK - No 1096361 
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