Formation | March 2006 |
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Founders | Debbie McCartney, Gill Johnstone, Ian Lewis, Gill Callar, Lin Carvell, Mike & Ross Francis, Patricia Smith, Rob Grimer, Nick Bones, Teresa Thompson, Patrick Hardman |
Registration no. | 1159590 |
Headquarters | Horsforth, Leeds |
Website | www |
The Bone Cancer Research Trust (BCRT) is a charity dedicated to fighting primary bone cancer. The charity funds research, raises awareness of the disease, provides patient information, and provides support services. The charity operates internationally but is based in the United Kingdom, Charity Number 1159590, [1] registered in 2006 in England and Wales. [2]
BCRT funds research into primary bone cancer, in particular, osteosarcoma, Ewing's sarcoma, chondrosarcoma, chordoma, spindle cell sarcoma, and adamantinoma.
BCRT was initially a parents' group started in September 2004. Five families who had lost children to osteosarcoma and 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 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.
The 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, and social media links.
The charity normally puts out two research calls per year. To date the charity has funded 83 projects totalling £3.9 million.
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 sarcoma and chondrosarcoma and a glossary/ medical dictionary.
The Bone Cancer Research Trust has an annual "Awareness Week" (in October). [3] [4] [5] [6]
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. [7] [8]
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.
The Bone Cancer Research Trust produces a twice yearly newsletter entitled "United".
The Bone Cancer Research Trust has National Institute for Health and Care Research (NIHR) Partner status. The charity also works closely with The Teenage Cancer Trust and the Information Standard.
BCRT governance is provided by a board of trustees. The current chair of trustees is Professor Alison Gartland (research active cell biologist). The deputy chair of trustees is Elizabeth Eatock. The remaining Board consists of Gill Johnstone (founder and patient parent), Mr Jonathan Stevenson (consultant orthopaedic surgeon), Professor Bernadette Brennan (consultant paediatric oncologist), Arlene Eves (former patient), Dr Darrell Green (research active molecular biologist and geneticist) and Damian Harper (former patient).
James Corden, Diane-Louise Jordan, Paterson Joseph, Piers Morgan, Amanda Holden, Ben Shephard, Aled Jones
A sarcoma is a malignant tumor, a type of cancer that arises from cells of mesenchymal origin. Connective tissue is a broad term that includes bone, cartilage, fat, vascular, or other structural tissues, and sarcomas can arise in any of these types of tissues. As a result, there are many subtypes of sarcoma, which are classified based on the specific tissue and type of cell from which the tumor originates. Sarcomas are primary connective tissue tumors, meaning that they arise in connective tissues. This is in contrast to secondary connective tissue tumors, which occur when a cancer from elsewhere in the body spreads to the connective tissue. Sarcomas are one of five different types of cancer, classified by the cell type from which they originate. The word sarcoma is derived from the Greek σάρκωμα sarkōma 'fleshy excrescence or substance', itself from σάρξsarx meaning 'flesh'.
A bone tumor is an abnormal growth of tissue in bone, traditionally classified as noncancerous (benign) or cancerous (malignant). Cancerous bone tumors usually originate from a cancer in another part of the body such as from lung, breast, thyroid, kidney and prostate. There may be a lump, pain, or neurological signs from pressure. A bone tumor might present with a pathologic fracture. Other symptoms may include fatigue, fever, weight loss, anemia and nausea. Sometimes there are no symptoms and the tumour is found when investigating another problem.
An osteosarcoma (OS) or osteogenic sarcoma (OGS) is a cancerous tumor in a bone. Specifically, it is an aggressive malignant neoplasm that arises from primitive transformed cells of mesenchymal origin and that exhibits osteoblastic differentiation and produces malignant osteoid.
Cancer Research UK (CRUK) is the world's largest independent cancer research organisation. It is registered as a charity in the United Kingdom and Isle of Man, and was formed on 4 February 2002 by the merger of The Cancer Research Campaign and the Imperial Cancer Research Fund. Cancer Research UK conducts research using both its own staff and grant-funded researchers. It also provides information about cancer and runs campaigns aimed at raising awareness and influencing public policy.
Chondrosarcoma is a bone sarcoma, a primary cancer composed of cells derived from transformed cells that produce cartilage. A chondrosarcoma is a member of a category of tumors of bone and soft tissue known as sarcomas. About 30% of bone sarcomas are chondrosarcomas. It is resistant to chemotherapy and radiotherapy. Unlike other primary bone sarcomas that mainly affect children and adolescents, a chondrosarcoma can present at any age. It more often affects the axial skeleton than the appendicular skeleton.
The Brain Tumour Charity is a UK-based, Charity Commission registered, charity dedicated to funding research, raising awareness of brain tumours, reducing diagnosis times and providing support and information for people with brain tumours, their families and friends.
Teenage Cancer Trust is a cancer care and support charity in the UK that exists to improve the cancer experience of young people aged 13–24. Founded in 1990, the charity's key service is providing specialist teenage units in NHS hospitals. It also trains and funds staff who are teenage cancer specialists. The units are dedicated areas for teenage and young adult patients, who are involved in their concept and creation. Medical facilities on the units are equipped with computers, TVs and game consoles.
Ewing sarcoma is a type of pediatric cancer that forms in bone or soft tissue. Symptoms may include swelling and pain at the site of the tumor, fever, and a bone fracture. The most common areas where it begins are the legs, pelvis, and chest wall. In about 25% of cases, the cancer has already spread to other parts of the body at the time of diagnosis. Complications may include a pleural effusion or paraplegia.
Orthopedic pathology, also known as bone pathology is a subspecialty of surgical pathology which deals with the diagnosis and feature of many bone diseases, specifically studying the cause and effects of disorders of the musculoskeletal system. It uses gross and microscopic findings along with the findings of in vivo radiological studies, and occasionally, specimen radiographs to diagnose diseases of the bones.
The Codman triangle is the triangular area of new subperiosteal bone that is created when a lesion, often a tumour, raises the periosteum away from the bone. A Codman triangle is not actually a full triangle. Instead, it is often a pseudotriangle on radiographic findings, with ossification on the original bone and one additional side of the triangle, which forms a two sided triangle with one open side. This two sided appearance is generated due to a tumor that is growing at a rate which is faster than the periosteum can grow or expand, so instead of dimpling, the periosteum tears away and provides ossification on the second edge of the triangle. The advancing tumour displaces the periosteum away from the bone medulla. The displaced and now lateral periosteum attempts to regenerate underlying bone. This describes a periosteal reaction.
The Ewing family of tumors (EFTs) is a group of small cell sarcomas including Ewing sarcoma of the bone, extra osseous Ewing tumors, and primitive neuroectodermal tumors. They are rare cancers, usually diagnosed in peoples' twenties. The sarcoma of bone is the most common of the variants. All forms are predisposed to metastasis and have had historically high rates of mortality. The family of tumors shares a common translocation mutation of the EWS gene on chromosome 22 to an ETS-type gene, most commonly the FLI1 gene. EFTs are highly malignant, with 5-year survival for patients with metastatic disease at 20%. The current standard of care includes resection, radiation, and chemotherapy.
Extraskeletal myxoid chondrosarcoma (EMC) is a rare low-grade malignant mesenchymal neoplasm of the soft tissues, that differs from other sarcomas by unique histology and characteristic chromosomal translocations. There is an uncertain differentiation and neuroendocrine differentiation is even possible.
Øyvind Sverre Bruland is a professor of Clinical Oncology and faculty of Medicine at the University of Oslo. Bruland holds a B.Sc., M.D and Ph.D. from the University of Oslo, Norway. His research includes: primary bone and soft tissue cancers (sarcomas) and skeletal metastases from prostate cancer and breast cancer; targeted radionuclide therapy, for instance the clinical development of Alpharadin, based on Radium-223; the tumor biology and prognostic impact of micro-metastases in bone-marrow aspirates on patients with primary bone cancer (osteosarcoma); external beam radiotherapy; and the radiotherapy of skeletal metastases and soft-tissue sarcomas.
Primary bone is the first bone tissue that appears in embryonic development and in fracture repair. It is characterized by its random position of collagen fibers. In most places in adults this tissue is replaced by secondary bone tissue except, for example, near the sutures of calvara or tooth sockets. The secondary bones have lower amounts of osteocytes so primary bone is much more easily penetrated by x-ray.
Malcolm Sutherland-Foggio was born on April 4, 1998, in Morristown, New Jersey. He is the Founder and Ex Officio Chairman of Make Some Noise: Cure Kids Cancer Foundation, Inc., a 501(c)(3) established to raise funds exclusively for childhood cancer research and increase awareness for these diseases.
John H. Healey is an American cancer surgeon, researcher, and expert in the surgical treatment of benign and malignant bone tumors and other musculoskeletal cancers. He serves as Chair of the Orthopaedic Service and Stephen P. McDermott Chair in Surgery at Memorial Sloan-Kettering Cancer Center (MSKCC), as well as Professor of Surgery at Weill Cornell Medical College, in New York, NY.
Sir Alan William Craft is a British paediatric oncologist and Emeritus Professor of Child Health at Newcastle University. Craft was most notable for work as one of nine founders of the Children's Cancer Study Group, focusing his research on paediatric oncology, especially the epidemiology of bone tumours that further led to an oncology research unit which has been involved in aetiological studies and in particular the role of irradiation in the development of childhood cancer.
A bone sarcoma is a primary malignant bone tumour, a type of sarcoma that starts in the bones. This is in contrast to most bone cancers that are secondary having developed as a metastasis from another cancer. Bone sarcomas are rare, and mostly affect the legs. The other type of sarcoma is a soft-tissue sarcoma.
Elena Huelva Palomo was a Spanish cancer activist, influencer, and writer. Through her regular use of social media, she divulged information about Ewing sarcoma, the type of cancer she was suffering from, to a wider audience, and demanded more investment for cancer research. She was credited with increasing the visibility of childhood bone cancer while dispelling misconceptions and myths about the disease.