BIRTH OF A CHARITY

20th October 2004

Michael Francis describes the birth of a new charity, the Bone Cancer Research Trust a new national alliance to fund research into Primary Bone

Cancer, and to offer information and support to patients, families and friends.

Gill Pilcher lives in Brighton. Her son Anthony died in 2002 from Primary Bone Cancer (PBC) - aged 15. Dr Ian Lewis is a Consultant Paediatric and Adolescent Oncologist, St. James’s University Hospital, Leeds. Gill had never met Ian, but had heard about him. In July 2004, she telephoned him. That conversation made him contact a few other families who he felt shared Gill’s experiences, concerns and aspirations, and led directly to the Bone Cancer Research Trust being founded as a national charity a year later.

All these families had lost their child to one particular PBC – Osteosarcoma. Typically, this type of sarcoma is detected in teenagers, with around 150 new cases detected annually in the UK, and with a survival rate of 55% at 5 years. Whilst stories of their experiences of diagnosis and treatment issues were remarkably similar, the overwhelming unifying factor was that they all were raising money for research into Osteosarcoma but were finding it hard to find any research projects to take their money! Ian Lewis suggested that the contacts net be widened to include families whose children had another form of PBC – Ewing’s Sarcoma – for which research was already underway. This would bring another 250 new cases a year of young patients. This proved to be the pivotal moment, particularly when John and Marian Dealey of the Adam Dealey Foundation, and Patricia Smith of The Krystle Smith Trust joined the group, both organisations having raised substantial sums for UKCCSG sponsored projects into Ewing’s Sarcoma (see Contact Issue 26).

The enlarged group wanted to go a stage further. Getting the perspective of former PBC patients was also important to the groups understanding of what patients need during their time of treatment and remission. Nick Bones was diagnosed with osteosarcoma when he was 13 and had his right leg amputated (he’s now 32, and has played Amputee Football for England, touring all around the world). He read in Contact about the formation of the Trust, and asked to join – he’s now a Trustee! Whilst their local fund raising would continue, with the money collected going into a single new national fund for research into causes, behaviour and treatment, they also wanted to provide information, support and, in the longer term, counselling services for those suffering from PBC, and their families.

With all this positive energy, the decision to form a national organisation was made, but the “missing link” was any direct input from Medical Practitioners. Ian Lewis was invited to become a Trustee and suggested Mr. Robert Grimer, the Consultant Orthopaedic Surgeon at the Royal Orthopaedic Hospital in Birmingham also be approached. Robert was already known to many of the families and, as the current Chair of the Sarcoma Group of the National Cancer Research Network, was seen as a key figure in promoting the vision of the Trust.

Ian and Robert formed a Scientific Advisory Panel to evaluate submissions for research funding before making recommendations to the Board. They suggested another distinguished Consultant Medical Oncologist should join them, Dr. Jeremy Whelan, the Clinical Director for Cancer Services at the Meyerstein Institute of Oncology at University College Hospital, London, and current Chair of Teenagers & Young Adults with Cancer (see Contact Issue 28). These three will be inviting other practitioners to join them as specialist advisors.

So, July 2005 saw the birth of the Bone Cancer Research Trust, open to all who want to join or support in raising awareness about the 400 new cases of PBC in children and young people that occur every year. Leaflets are being distributed to all centres which deal with PBC, and the website – www.bonecancerresearch.org – is available for further information. “Practitioner Awareness” was targeted through the Trust’s presentation to some 150 delegates to the National Sarcoma Group Conference in Birmingham during November 2005, and bids are now invited for the first round of funded projects.

e-mail info@bonecancerresearch.org
Bone Cancer Research Trust
Children’s Day Hospital
St. James’s University Hospital
Beckett Street
Leeds LS9 7TF

KrystleSmith.org | Tel 0402 39370 | |