Bone Cancer Research Trust

The Bone Cancer Research Trust is a charity providing funding for research into primary bone cancer, raising awareness of the disease, providing patient information and providing support services. The charity operates internationally but is based in the United Kingdom, Charity Number 1113276, registered in 2006 in England and Wales.[1]

The Bone Cancer Research Trust
FormationMarch 2006
FoundersDebbie McCartney,
Gill Callar, Lin Carvell,
Mike & Ross Francis,
Patricia Smith, Rob Grimer,
Nick Bones, Teresa Thompson,
Patrick Hardman
Registration no.1159590
HeadquartersHorsforth, Leeds
Websitewww.bcrt.org.uk

About

BCRT is dedicated to funding research into primary bone cancers, in particular osteosarcoma, Ewing's sarcoma and chondrosarcoma.

The vision of the charity is ‘a world where lives are no longer limited by primary bone cancer’ and regularly uses the slogan ‘until there's a cure.’ The charity aspires to be the global authoritative voice on primary bone cancer. Fundraising events for the charity are accompanied by the hashtag ‘#TeamBones.’

The charity’s aim is to improve outcomes for people with primary bone cancers through research, awareness, information and support.

History

The Bone Cancer Research Trust was initially a parents’ group started in September 2004. Five families who had lost children to osteosarcoma and who all wanted to see more research carried out into this rare cancer to hopefully improve the outcome for future sufferers were brought together.

The parents' group increased with the addition of families, including one from Ireland, whose children had battled against another primary bone cancer, Ewing’s sarcoma. Expanding the group helped to unite skills and enthusiasm as well as funds already raised. The families pooled money totalling £176,000, to start the charity and fund the first pieces of research.

The Bone Cancer Research Trust became a registered charity in March 2006 and by September 2006, the first two successful applications for research grants had been accepted.

Growth

In just two years, the meeting of a small group of bereaved parents grew into a significant and credible international charity with a turnover of around £1,000,000 per annum, which is driving research into the causes and treatment of primary bone cancer, and in particular of osteosarcoma, Ewing’s sarcoma and chondrosarcoma.

Website

The Bone Cancer Research Trust's website, provides information about the charity’s activities, including details of past and present research being funded by the charity; primary bone cancer information, information for Health Care Professionals, a patient’s forum, stories of people’s bone cancer journeys, links to BCRT's Twitter and Facebook pages, and YouTube Channel.

Research funding

The charity normally puts out two research calls per year; to date the charity has funded 83 projects totalling £3.9 million resulting in numerous peer reviewed publications. Research proposals are peer reviewed and externally assessed by the Independent Scientific Advisory Panel. The current panel chair is Professor Pamela Kearns, a research active clinical paediatric oncologist.

Present day activities and future direction

The families who formed the charity had major concerns regarding the lack of reliable information available. Little detailed information resources were available in the UK or the internet as a whole.

Alongside research funding, information provision is now one of the charities activities. The Bone Cancer Research Trust provides information (online and printed) on primary bone cancers for patients, their families, the general public, media and Health Care Professionals. Currently there is detailed information on osteosarcoma, Ewing’s sarcoma and chondrosarcoma and a glossary/ medical dictionary. BCRT produce information specifically aimed at children, teenagers and adults. In addition, information on other primary bone cancers such as chordoma, spindle cell sarcomas, angiosarcoma and a list of open and recruiting clinical trials are available.

The charity also provides support for patients and their families and friends, and in the longer term, specialist counselling services may be made available for them.

Raising awareness

The Bone Cancer Research Trust has an annual "Awareness Week" during which the charity concentrates on gaining as much local and national media coverage as possible in order to inform and educate people about primary bone cancer symptoms.[2][3][4][5] The Bone Cancer Research Trust website information about symptoms of bone cancers is more complete than all other sources of information. This is important for medical practitioners when they are diagnosing as well as for young people and their parents when they need to be aware that some symptoms really do need to be checked by a doctor.

During Awareness Week various activities are carried out by the charity’s supporters, with the main campaign being "Bake a Cake for Bone Cancer". Another highlight is the annual Patients’ and Supporters’ Conference, which brings together patients and parents with the many different professionals whose work affects the lives of those who find themselves with a diagnosis of bone cancer.[6][7]

Fundraising

The work of the Bone Cancer Research Trust is almost entirely funded by the public. The charity raises money through donations, community fundraising events, retail and legacies. Fundraising events are commonly tagged on social media using ‘#TeamBones.’

Publications

The Bone Cancer Research Trust produces a twice yearly newsletter entitled "United".

Partnerships

The Bone Cancer Research Trust has National Institute for Health Research (NIHR) Partner status. The charity also works closely with Sarcoma UK, The Teenage Cancer Trust and the Information Standard.

Board of Trustees

BCRT governance is provided by a Board of Trustees. The current chairman is Andy Lewis. Deputy chairman is Roger Paul. The remaining Board consists of Gill Johnstone (founder and patient parent), Sarah Dawson (patient parent and business coach), Mr Jonathan Stevenson (consultant orthopaedic surgeon), Malcolm Matthews (patient parent and charity director), Professor Bernadette Brennan (consultant paediatric oncologist), Hannah Millington (former patient), Arlene Eves (former patient and solicitor), Dr Darrell Green (molecular biologist and geneticist), Professor Alison Gartland (molecular and cell biologist) and Damian Harper (former patient).

Celebrity Ambassadors

Holly Branson, Sam Waley-Cohen

Celebrity Supporters

James Corden, Diane-Louise Jordan, Paterson Joseph, Piers Morgan, Amanda Holden, Marina Berry, Ben Shephard, Aled Jones

See also

References
  1. The Charity Commission: http://www.charity-commission.gov.uk/Showcharity/RegisterOfCharities/CharityWithoutPartB.aspx?RegisteredCharityNumber=1113276&SubsidiaryNumber=0
  2. Be aware of the symptoms of bone cancer: http://www.oxfordmail.co.uk/news/yourtown/oxford/8441824.Be_aware_of_the_symptoms_of_bone_cancer/
  3. BCRT Awareness Week: http://www.bonecancerresearch.org.uk/aw_awareness_week_2010.php Archived 2012-02-03 at the Wayback Machine
  4. Cancer victim's family praises charity website: http://www.yorkshireeveningpost.co.uk/news/latest-news/cancer_victim_s_family_praises_charity_website_1_3012852
  5. Son's life saved thanks to parents persistence: http://www.thisisstaffordshire.co.uk/news/Son-s-life-saved-thanks-parents-persistence/article-2764839-detail/article.html
  6. Callum bakes for bone cancer fund: http://www.leighjournal.co.uk/news/8469631.Callum_bakes_for_bone_cancer_fund/
  7. Bake a Cake: http://www.bonecancerresearch.org.uk/f_bake_a_cake_2010.php Archived 2012-02-03 at the Wayback Machine



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