At BCRT we are a dedicated, hardworking and happy team, all striving for the same goal.
Roger Paul: Chairman
My daughter Claudia lost her battle with a Ewings Sarcoma in June 2006, shortly after her 17th Birthday. She took the initiative in looking for information and organisations via the internet, which supported Primary Bone Cancer. She found a Golf Day, run by the Adam Dealey Foundation and suggested that I play in it as a way of raising funds and awareness of this disease.
My wife Gail and I went to the BCRT Conferences, and I also managed to play in the Golf Day; from there I volunteered to become a Trustee of BCRT, because I saw an opportunity to directly affect the lives of those people who develop Primary Bone Cancer, through research into the causes of this disease. I duly became a Trustee in late 2008.
I worked for AT&T in the Telecommunications industry until 2002, being responsible for all Operational aspects of their business throughout Europe. I am also a Trustee Director of the AT&T Pension Scheme in the UK, a position that I have held since 1990.
We live in Chipping Campden in the Cotswolds with three dogs and two horses; I am interested in sport, particularly football and golf, which has allowed me to meet and play with some of the great professionals.
Sarah B. Dawson
I am a Director of my own company and work with major clients designing and delivering business and management solutions including Mercedes Benz, Ford Motor Company, Center Parcs, the Youth Hostel Association and the David Lewis Centre for Epilepsy. I have worked independently for 20 years. I was previously an HR Manager for Marks and Spencer plc.
My involvement with BCRT stems from my son Alexander being diagnosed with Osteosarcoma in December 2005. Al embraced the treatment offered to him and with a very positive outlook went on his own cancer journey. Sadly the treatment and drugs available did not cure him and his journey ended in November 2007. He was 16 years old.
I have committed myself to support those who will help to establish how the disease begins, why specific individuals develop the disease, promote earlier diagnosis and through research develop more robust and successful treatments. I do not want others in the future to suffer as Al did or endure the loss we suffer as a family.
I worked for the Virgin Group of Companies for some 31 years before deciding to take early retirement in June 2012 to spend more time with the family and concentrate on my charity activities.
I have been married to my wife Marian since 1973 and am a big football fan and season ticket holder at Luton Town as well as being a huge music buff in particular Tamla Motown and Soul music.
We had two children Justin and Adam and sadly in October 1994 Adam was diagnosed with Ewings Sarcoma and passed away aged just 10 the following July.
As there was nothing set up to support Ewing’s we set up The Adam Dealey Foundation to raise funds for the research and treatment of this terrible illness and annual events are still held in his memory.
In 2004 I was approached by Ian Lewis to join with other families who had lost children to Bone Cancers.
I live on the edge of the New Forest and run my own business providing bookkeeping and payroll services for small businesses in the South of England. My whole working life has involved accounts and I have worked independently for 22 years. My work is very interesting and demanding and there is always something new for me to learn.
My son, Anthony, was diagnosed with Osteosarcoma in April 2001. He started fundraising whilst going through his treatment. Sadly he lost his battle in October 2002.
After his death, I continued with his fundraising and registered the Anthony Pilcher Bone Cancer Trust and I am one of the founder trustees of BCRT. Anthony wanted to ensure that at some stage in the future, children and young adults would have earlier diagnosis, better drugs and improved survival rates.
I will endeavour to carry out his wishes (and mine) to the best possible end.
Professor Ian J. Lewis – Medical Director
Ian is a founder trustee at BCRT. He is currently Medical Director at Alder Hey Hospital in Liverpool, having previously trained there between 1978 and 1985. He was a Consultant Paediatric Oncologist in Leeds from 1985 where he had additionally undertaken a number of senior leadership roles including Deputy Medical Director; and Associate Medical Director for Children's Strategy for NHS Yorkshire and Humber. He has a number of national roles and responsibilities. He is a member of both the Department of Health Payment by Results Clinical Advisory Group; and the National Clinical Advisory Team. In January 2012, Ian was appointed as co-Chair of the National Children and Young People’s Healthcare Outcomes Forum with the remit to advise the Secretary of State about how to improve healthcare outcomes for children and young people. Ian remains active in clinical research, particularly clinical trials and health services research and he has a national and international reputation within paediatric and adolescent oncology. He is currently leading a European Work Package aimed at developing an expert Teenage and Young Adult Oncology network throughout Europe. Ian is also a trustee of medical charities related to his clinical work and of his local rugby club.
My qualification, above all others, for being a Trustee of BCRT is the diagnosis of my daughter Bláthnaid with Ewing's Sarcoma at the end of April 2005 and her subsequent death due to this cruel disease 17 months later. She was just 13 years old.
During her illness she discovered the existence of the then newly formed Bone Cancer Research Trust and decided that when she was well enough she would raise funds to help others yet to be diagnosed. Tragically, this was never possible and remains with 'jumping out of a plane' and 'swimming with sharks' on her list of unfulfilled dreams and ambitions.
I was born in Dulwich, south east London to Irish parents and moved back to beautiful Sligo, on the North West coast of Ireland as a child. This is where I met my husband John. I joined Bank of Ireland's Foreign Department in London from school and our first three children, Sorcha, Bláthnaid and Connor were born in England.
We returned to live in Sligo with our family at the end of 1995 and presently Ailbhe; our youngest daughter arrived to complete our family. John and I have our own business in Sligo city and are immensely proud of and grateful to our incredible community who have joined with us after Bláthnaid's death in forming the Bláthnaid Foley Trust.
I am an Orthopaedic Surgeon who looks after children and adults with bone tumours and have been part of the North of England Bone and Soft Tissue Tumour Service Team in Newcastle since 2001.
During that time I have treated numerous patients with these challenging conditions and understand how difficult it can be. We need to stimulate research into bone tumours because good research can transform the lives of patients.
The Bone Cancer Research Trust has made tremendous progress by funding research into the causes of bone tumours and their treatments. I was delighted to become a Trustee because the work of the Trust is so important for patients and their families.
I qualified in September 2007 as a commercial property solicitor and subsequently became a commercial solicitor in January 2009. My interest in the charities sector has led me to recently establish a charities team within the commercial projects and public sector team at Leeds based law firm Walker Morris.
My brother Luke was diagnosed with Ewings Sarcoma on 5th April 2005 and passed away on 1 July 2006. He was 17 years old. Luke was a very sweet boy who loved football, his pet cats and socialising with friends. He was incredibly brave throughout his treatment.
By being a trustee of BCRT I endeavour to help BCRT in its work raising awareness of primary bone cancer, providing support to those affected and funding research into treatment and ultimately finding a cure for the disease. I want to help prevent others go through the suffering Luke endured and the resulting devastating impact this has for families.
I have been a Director of my own company for the last 8 years and work with major clients, many in the Media industry as Projects Director and am currently a Technology Director in ITV. Previously I worked as a Programme Director for RBS, Sainsbury's, Coopers and Lybrand and as a Board Director for BBC Technology. I am married to Angela and have three children: Emma, Jamie and Alex.
Angela and I first became aware of the work of BCRT during my son Alex's battle with Osteosarcoma. He had a late diagnosis, and as a result the tumour had metastasised to his lungs. He endured four years of operations, chemotherapy, radiology, and alternative therapy with amazing bravery and positivity.
The BBC made an inspirational film Alex: A Life Fast Forward which wanted to make to increase awareness of primary bone cancer in the hope that others would seek early diagnosis, and that outcomes might be improved. The film also showed that you can deal with misfortune and still enjoy your life. Alex died in 2011, 5 days after his marriage to Ali and his 22 birthday. Essentially, we want to pursue his wishes through BCRT and are committed to finding a cure for a disease which affects young people and families in such a cruel way and for which there have been no significant improvements in over 20 years.
Dr Gill Lawrence
I was the Director of the West Midlands Cancer Intelligence Unit (WMCIU) for over 20 years. In this role I was responsible for the collection of data on all cancers (including sarcomas) diagnosed and treated in the West Midlands, and for monitoring and improving the quality of the West Midlands NHS cancer screening services (breast, cervical and bowel). In 2008 the WMCIU was chosen by the newly formed National Cancer Intelligence Network (NCIN) to be the cancer registry with lead responsibility for producing information on incidence, treatment and outcomes for breast cancer and sarcoma patients.
When the WMCIU became part of Public Health England on 1 April 2013, I took on a new role as Breast Cancer and Sarcoma Specialist Advisor. I this role I am continuing to oversee the work of the NCIN’s breast and sarcoma lead analytical teams, and to oversee the annual NHS Breast Screening Programme and Association of Breast Surgery annual audit of screen-detected cancer.
In 2012 I attended a BCRT patients’ and supporters’ conference in Oxford. I was really impressed with the friendly atmosphere at the event, and the way in which contributions from patients and carers were given as much prominence as those from the professional speakers. I am hoping that by becoming a Trustee I can use my experience in data analysis and service quality assurance to make a useful contribution to the BCRT’s aims of improving the outcomes for patients diagnosed with bone cancer.
My nursing career spanning some 40 years started when I was a 17-year-old student nurse at the Royal National Orthopaedic Hospital at Stanmore. Now at the Nuffield Orthopaedic Centre in Oxford working in the field of primary bone cancer I have developed a special interest in sarcoma, and in oncology, and have been fortunate to work with and learn from both a renowned medical oncologist and an excellent multi-disciplinary team. Over this time I have found myself drawn into the diversity and challenges that a sarcoma diagnosis delivers and the plight that both patients and their families face when this happens. It seems all the more unfair that primary bone cancer so often affects young people who have not even started to live their lives. I have learnt a great deal over the past seven years and I am keen to use all this knowledge as a trustee by being an information resource, a signpost using the connections built up over time and anything else that can help the BCRT.
Professor Donald Salter
I am Professor of Osteoarticular Pathology at the University of Edinburgh and am delighted to join BCRT as a trustee, to get involved more closely with bone cancer patients and do what I can to improve outcomes. I am also the lead pathologist for the Scottish Sarcoma Network and am hopefully abreast of more recent developments in general cancer biology and treatment, many of which could be transferable to patients with bone cancer. There are a lot of good things happening out there in the cancer field and we need to ensure that advances in diagnosis and treatments identified in the more common cancers that are applicable to patients with bone cancer are appropriately identified and implemented.
Clerk to the Trustees
Jane Nattrass is the Clerk to the Trust (Voluntary). She lost her son, Henry, to Osteosarcoma in 2010 after running her own Arts and Consultancy Business for 15 years. Since then, she has raised money for families in similar circumstances and her book '348 Days' has been published, outlining the experience of Henry, her family and friends, all proceeds of which go to charity.