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 support services. The charity operates in both Ireland and the United Kingdom, Charity Number 1113276, registered in 2006 in England and Wales.
The vision of the charity is ‘a world where lives are no longer limited by primary bone cancer.’ The charity aspires to be the authoritative voice on primary bone cancer in the UK and Ireland.
The charity’s aim is to improve outcomes for people with primary bone cancers through research, awareness, information and support.
The Bone Cancer Research Trust was initially a parents’ group started up in September 2004. Five families who had lost teenage 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.
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 £500,000 per annum, which is driving research into the causes and treatment of primary bone cancer, and in particular of osteosarcoma and Ewing’s sarcoma.
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 dedicated Ireland section, a patient’s forum, stories of people’s bone cancer journeys, links to BCRT's Twitter and Facebook pages, and YouTube Channel.
The charity normally puts out two research calls per year; to date the charity has funded 24 projects totalling £800,000 resulting in numerous publications.
Present day activities and future direction
The families who formed the charity also had major concerns regarding the lack of reliable information available, this was most apparent in Ireland but little detailed information resources were available in the UK either 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 and Ewing’s sarcoma and a glossary/ medical dictionary. BCRT produce information specifically aimed at teenagers. In addition, information on other primary bone cancers such as chondrosarcoma, chordoma, spindle cell sarcomas, angiosarcoma and a list of open and recruiting clinical trials will be available in the future.
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.
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. The Bone Cancer Research Trust website information about symptoms of bone cancers is more complete than all other UK and Irish 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.
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.
The Bone Cancer Research Trust produces a twice yearly newsletter entitled BCRT Update.
Holly Branson, Sam Waley-Cohen
- The Charity Commission: http://www.charity-commission.gov.uk/Showcharity/RegisterOfCharities/CharityWithoutPartB.aspx?RegisteredCharityNumber=1113276&SubsidiaryNumber=0
- 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/
- BCRT Awareness Week: http://www.bonecancerresearch.org.uk/aw_awareness_week_2010.php
- Cancer victim's family praises charity website: http://www.yorkshireeveningpost.co.uk/news/latest-news/cancer_victim_s_family_praises_charity_website_1_3012852
- 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
- Callum bakes for bone cancer fund: http://www.leighjournal.co.uk/news/8469631.Callum_bakes_for_bone_cancer_fund/
- Bake a Cake: http://www.bonecancerresearch.org.uk/f_bake_a_cake_2010.php