How It Began

The Bone Cancer Research Trust was formed in 2005 as an alliance of a number of established local charities and groups of family and friends of Primary Bone Cancer patients throughout Britain and Ireland. They share a common goal – to promote research into the causes and treatment of Primary Bone Cancer, and in particular of Osteosarcoma and Ewing’s Sarcoma. The Trust has now widened its membership to include Bone Cancer Patients, Medical Practitioners and anyone interested in supporting research into these disabling and life-threatening diseases. The Trust is also looking to provide information, support and, in the longer term, counselling services for those suffering from Primary Bone Cancer, and their families...

  In the beginning....

In early 2004, some 5 families - unknown to each other - met in Leeds at the invitation of Dr. Ian Lewis, at the Children's Day Hospital, St. James's University Hospital. Their common link was that they had all lost teenage children to Osteosarcoma, the most common of the Primary Bone Cancers.

From this a network involving other families evolved. But it was realised that a second, related group - parents who had lost their child to Ewing's Sarcoma - would be an extremely valuable extension, particularly as two family groups were already involved with the United Kingdom Children's Cancers Study Group (UKCCSG) at the University of Leicester.

This wider grouping of established fundraising organisations, together with local family and friends' groups, made all those involved realise that a national charity was possible. News, that groups in the Republic of Ireland were keen to join, only reinforced everyone's determination to establish a dynamic force of parents and supporters, who could make a difference to the attitudes to carrying out research into Primary Bone Cancer.

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  Attracting current and former patients

But this was not quite enough. The group realised that input from current and former patients would be invaluable. However much parents and friends can feel the pain of seeing a loved one battle with cancer, this is nothing compared with being the person experiencing the trauma of this cruel disease, and being able to give hope to other sufferers.

The final part of the jigsaw was to attract the attention of eminent Medical Practitioners whose acknowledged expertise in Oncology, and particularly Primary Bone Cancer, would grab the attention of fellow professionals, and add credibility to what the group wanted to achieve.

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  The Scientific Advisory Panel

Dr. Ian Lewis was asked to form a Scientific Advisory Panel which would evaluate submissions before making recommendations to the Trustees. Ian was joined by Mr. Rob Grimer, Consultant Orthopaedic Surgeon at the Royal Orthopaedic Hospital, Birmingham, and Dr. Jeremy Whelan, Consultant Medical Oncologist and Clinical Director of Cancer Services, Meyerstein Institute of Oncology, University College Hospital, London.

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  Information and Support

The Trust is also looking to provide information, support and, in the longer term, counselling services for those suffering from Primary Bone Cancer, and their families.

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  The Trust is born

Throughout the early part of 2005, a dedicated group worked to develop ideas into workable proposals, and then into a working reality. On 2nd July 2005 a formal trust document was signed and 10 Trustees were appointed (please see the Trustees page).

By November 2005, the work of the Trust was becoming widely known, and the Trustees were delighted to receive an invitation from the British Sarcoma Group to attend their conference in Birmingham. To an audience of some 150 scientists and medical practitioners, they outlined the intentions of the Trust and gave details of the research grants that would be available. Not surprisingly, the response from the audience was very enthusiastic!

So in just 18 months the bringing together of a small group of bereaved parents, with a common desire to "do something about bone cancer", has blossomed into an important new charity...

...the Bone Cancer Research Trust.

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