Trustees

Michael Francis
Chairman
(Parent)

My son Guy was diagnosed with Osteosarcoma in 1997 aged 17. Over the next 6 years he went into remission twice but finally died in April 2002, aged 23. Towards the end of his life, he founded the Guy Francis Bone Cancer Research Fund, with the intention of establishing a Research Fellowship at the University of Leeds via St. James's University Hospital. This was because he thought that no other organisations existed with the aim of funding research into the causes and treatment of Primary Bone Cancer, particularly in teenagers and young people. He would have been thrilled to know that there are others, and my wife Ros, daughter Lucinda, Guy's best friend Paul and myself know that he would have approved fully of his fund being an integral part of the international initiative which has become the Bone Cancer Research Trust.

I hope to bring to the Trust my business experience of some 30 years as a Chartered Marketer and Manager, as well as that derived from being a Professional Lecturer in Further & Adult Education. Currently I am School Business Manager in one of York's largest secondary schools, and take a special interest in supporting our many teenagers who have medical disabilities, but who choose to remain in mainstream inclusive education.

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John Dealey
Deputy Chairman
(Parent)

I was born on 4th November 1948, have been married to Marian for 32 years and have lived in the Boxmoor area of Hemel Hempstead all my life. We had two sons one of whom was Adam who sadly suffered from Ewings Sarcoma in July 1994. Our other son Justin is now 25 years old and works as a presenter on BBC Three Counties Radio which is based in Luton.

I have, for the past twenty five years, worked for The Virgin Group being based at their offices in Notting Hill Gate where I am Group Administration Manager taking care of the day to day needs of the building and the 100 or so members of staff based there.

My main interests are football and music. I follow the ups and downs of Luton Town where I am a season ticket holder and attend all the home games with Justin, who is also PA announcer at the club. I have seen many great games over the years and as a teenager was lucky enough to be at Wembley on that day in 1966 when England lifted the World Cup.

My interest in music goes back to my early teens and am, for want of a better term, a vinyl and CD freak driving Marian out of house and home with my massive collection, which covers every taste from the 60s to the present. If asked what my favourite taste is I would have to say the Motown era of the 60s and over the years have been fortunate enough to see all the major Motown acts live.

After Adam sadly died it was apparent that there was no specific charity set up to support the research of Ewing's Sarcoma and I was encouraged to set up a fund in his memory. Over the past ten or so years we have held many events in his memory including an annual golf tournament which is attended by well over 200 people in the evening.

The support of both our many friends and my colleagues at Virgin has been unbelievable, raising tens of thousands of pounds each year to fund research.

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Nick Bones
(Former Bone Cancer Patient)

My name is Nick Bones and I am one of the Trustees of the Bone Cancer Research Trust. I was born on 21st December 1972 and am currently single living in Scunthorpe, North Lincolnshire. I work as a Disability Employment Advisor for Jobcentreplus, part of the Department for Work & Pensions. I have worked for the Jobcentreplus for six years; previous to that I was an Office Manager for a local Insurance Brokers.

I was diagnosed with Osteosarcoma in 1986 and underwent both surgery and chemotherapy over a four-year period until having my right leg amputated above the knee in 1990. I have been in remission ever since.

My interests include watching football; I support my local team Scunthorpe United both home and away, and I also follow the fortunes of Manchester City and attend their home games when I can. I have been an active sportsman over the last 10 years representing my country at amputee football in various tournaments in far-flung parts of the world until I finished in 2003. I still enjoy going to the gym, cycling, swimming and generally keeping fit.

I am looking to work with the Bone Cancer Research Trust to help promote research and treatment of the disease and bring it more public awareness. I also hope to be able to help people who are currently affected by the disease.

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Rob Grimer FRCS
(Consultant Orthopaedic Surgeon)

Rob Grimer is a Consultant Orthopaedic Oncologist working at the Royal Orthopaedic Hospital in Birmingham. His interest in sarcomas was kindled when he did his first house surgeon job after qualifying working for Sir Rodney Sweetnam at the Middlesex Hospital in London.

In those days the only treatment for patients with bone tumours was amputation. Expecting never to see another sarcoma again he later moved to Birmingham and worked for Rodney Sneath at the Royal Orthopaedic Hospital in Birmingham. In the space of just five years the treatment of bone tumours had radically altered with the advent of chemotherapy and limb salvage surgery. He thereafter became 'hooked' on the management of patients with sarcomas and was appointed the first orthopaedic oncologist in the country in 1988.

Since then he has become the senior surgeon at the Royal Orthopaedic Hospital Oncology Service - a national referral centre for patients with musculoskeletal malignancy. He is the author of numerous scientific papers on all aspects of the care of patients with bone and soft tissue sarcomas and is currently the Chairman of the Sarcoma Group of the National Cancer Research Institute and Secretary of the British Sarcoma Group.

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Patrick Hardman
(Parent)

I've lived on the Wirral all my life and have been involved in the motor industry for the past 28 years in the local area, predominantly on the sale side, in middle and senior management and in more recent years, owning and running my own companies.

I have two children, Claire and Christopher. Christopher unfortunately died from Osteosarcoma in 2004, two weeks before his 16th Birthday. I knew I had to do something in Christopher's memory to help fund much needed research into Osteosarcoma, which it became apparent during Christopher's illness was not being carried out.

With the help of family and friends, we have set up our Registered Charity CHORF (Christopher Hardman Osteosarcoma Research Fund). Through 2005 we have had several events, small and large, and managed to bring a greater awareness of Osteosarcoma to our locality and during the process raised approximately £50,000.

After speaking to Ros Francis in early 2005 and finding out about similar groups to ours, I attended the meetings for the Bone Cancer Research Trust (at the time we had no name, just an interest in starting research and a passion to make a difference). I have now become a Trustee of BCRT and look forward to being part of the research programme to be started in 2006.

In his short life, Christopher became an accomplished magician and after his tragic death, hopefully we can find a little magic of our own to find a cure for Osteosarcoma.

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Ian Lewis FRCP FRCPCH
(Consultant Paediatric & Adolescent Oncologist)

Ian Lewis qualified in medicine from Bristol University in 1974 and after training and research posts in Bristol and Liverpool was appointed as a consultant in Leeds in 1985. He is currently Consultant Paediatric and Adolescent Oncologist at St James's University Hospital Leeds, and Associate Medical Director for Children's and Young People's Strategy at West Yorkshire Strategic Health Authority.

Ian has had extensive involvement in bone tumour research for approaching 20 years. He is Past Chairman of the United Kingdom Children's Cancer Study Group (UKCCSG) Bone Sarcoma Group, the Medical Research Council Bone Sarcoma Working Group and UKCCSG New Agents Group and remains an active member of these as well as the European Osteosarcoma Intergroup and the Euro-Ewing Steering Committee.

He has been (and remains) a Principal Investigator of several large international randomised trials in Osteosarcoma and Ewing's Sarcoma as well as a number of New Agent studies. He is becoming increasingly interested in health services research, particularly in trying to understand the impact of delayed diagnosis on treatment of bone tumours. He provides the clinical lead in translational research to the Candlelighters' Children's Cancer Laboratory at the Cancer Research UK Cancer Medicine Research Unit in Leeds where there are currently 9 scientific staff working with particular emphasis on Ewing's Sarcoma. He is the principal grantholder of CRUK Euro Ewing 99 grant and has over 100 peer-reviewed publications.

His involvement with BCRT started in 2004 when he was contacted by several families interested in promoting research into bone cancers. He is passionate about the need to improve research in this area and to try and build research capacity in the UK.

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Gill Pilcher
(Parent)

My name is Gill Pilcher and I am one of the Trustees of the Bone Cancer Research Trust. I was born in London in 1956 and attended school there until my parents moved to Peacehaven in East Sussex when I was 15. I went straight into full time employment as an office junior with a local company. I gradually gained experience in bookkeeping, payroll and administration and started my own business in 1990.

I adopted my daughter, Katie, in 1986 when she was 2 years old. Katie has a learning disability and lived with me until earlier this year when she moved into sheltered accommodation to gain more independence. My son, Anthony, was born in December 1986 after many years of fertility treatment. I have always been a working mum, but stopped work from the time Anthony became ill until he died in October 2002. I started working again in January 2003 and have gradually re-built my client base.

With the help of friends and family, I started a charity to carry out my son's wishes to raise money for research into Osteosarcoma. I keep busy with the charity and my own business, but I now also make time for myself because losing my son has taught me that we never know what is around the corner.

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Patricia Smith
(Parent)

My daughter Krystle was diagnosed with Ewing's Sarcoma on the 20th of June 2001 and given six months to live at that stage. She lived for nine and died 15th of March 2002.

Our lives were changed forever. Before this I was working in an IT company after being a stay at home mother for twelve years raising three children - Stephen, Krystle, and Darren. I always felt no one could look after them as good as me. We were just an ordinary family. I enjoyed being back in the world of work; I thought this was fantastic. But after Krystle died I could never bring myself to go back.

I had a great interest in the Internet and looking one day I found the Adam Dealey Foundation website. I phoned John, as I never had anyone to talk to about Ewing's Sarcoma - not even a doctor, as they knew very little. John asked me to try and raise some money for research with a Roy Keane jersey and had it shipped to me.

I set up a raffle and raised 4,000 Euros. People wanted to give, and coming through an airport from the UK one day I saw a collection box on a counter and thought this might go well in Ireland. I got home and set the small charity up. I called it The Cure for our Children Foundation and to date it has raised 50,000 Euros.

It has snowballed and now takes up a lot of my time. It has got me through some very difficult times. I hope some day the words 'There is nothing we can do' will not be said and this is why I am a Trustee of The Bone Cancer Research Trust.

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Sally Hurst
(Former Bone Cancer Patient)

I first became involved with the Bone Cancer Research Trust after my own diagnosis with osteosarcoma in 2005. I wanted to do something to improve outcomes for bone cancer patients, so supporting a charity that funds research into the disease was a positive step for me to take following treatment.

As a journalist, I hope to use my knowledge of the media to help the charity strengthen its public profile and raise awareness about primary bone cancer. I am particularly interested in the issue of late diagnosis, and how speed of referral and diagnosis might be improved.

I am in remission from cancer and determined to enjoy life to the full. In the past two years I have got married, travelled round Australia, moved house, and given birth to my beautiful baby daughter, Holly.

I also write a blog about adapting to life after cancer, www.sallyyoung.blogspot.com which I hope will help other young people diagnosed with this disease.

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