Support Chordoma UK and help find a cure for this relentless bone cancer

Chordoma is a rare primary bone cancer, meaning that it arises in bone (rather than spreads to bone).
The bones involved are those at the base of the skull, the vertebral bodies (back bones), and the bone of the sacrum and coccyx at the base of the spine. Chordoma is thought to arise from a persistent embryonic tissue (notochordal cells), which normally disappears before birth, but can persist in some people. However, the majority of individuals with notochordal remnants do not develop chordoma. Chordoma is part of a family of cancers called sarcoma, which include cancers of the bones, cartilage, muscles and other connective tissue. Chordomas are generally slow growing, and tend to recur after treatment.

Treatment options for chordoma are limited. Initial diagnosis of chordoma is often difficult as its presenting symptoms can mimic more common musculoskeletal pain or other more common diseases. Research has led to a definitive marker for chordoma, but now further research is needed to use these findings to discover how best to treat patients. There is little funding available for research into this relentless bone cancer mainly because it is relatively rare, occurring in only 1 in 800,000 of the population. Without a focused approach to raising money for research into chordoma, little will change quickly.

Read more about what we want to achieve >

Susan Fitz-Gibbon
Founder and diagnosed with Chordoma 2007

Gerald Fitz-Gibbon

Richard Sutton-Mattocks

Richard Sutton-Mattocks joins the Board of Chordoma UK having previously served over 7 years as Chairman of the UCL Cancer Institute Research Trust, supporting cancer research at the UCL Cancer Institute. In that role he assisted with the development of Chordoma UK and witnessed at first hand the research of Professor Adrienne Flanagan into potential therapies with which to treat chordoma. Inspired by that research and by the energy and determination of Susan and Gerald to improve outcomes for chordoma sufferers worldwide, Richard was delighted to be invited to join the Board of Chordoma UK. A graduate of Oxford University and a former Partner of Clifford Chance LLP, Richard is also a member of the Advisory Board of the Debbie Fund, supporting research at the UCL Cancer Institute into therapies for cervical cancer.

Jerry del Missier
Founder and Executive Chairman, Copper Street Capital

Jerry is the founder and Executive Chairman of Copper Street Capital LLP, an independent investment firm. Previously, he was a senior executive of Barclays Bank Plc in London and New York for many years and also worked at Bankers Trust and Bank of Nova Scotia in Toronto.

Jerry is a past Chairman of the Board of the Securities Industry and Financial Markets Association (SIFMA), and a member of the boards of the Global Financial Markets Association and the International Swaps and Derivatives Association. He currently serves on the board of the Metropolitan Opera in New York and the Maple Leaf Trust in London.

A passionate believer in the transformative power of education, Jerry also serves as a board member of Room to Read, a global education and literacy organization, the Sutton Trust and the Advisory Board of Queen’s University Smith School of Business in Kingston, Canada. He is also a past member of the Queen’s University Board of Trustees where he studied, earning a BSc (Chemical Engineering) and an MBA.

Ed Major

Ed has built his professional career in the marketing world within professional services and technology companies. He has worked for large companies, including Gartner and Oracle, as well as start ups, such as Orca Social, that he also co-founded. He currently runs the commercial operations for the marketing vertical at Globality, a Silicon Valley based technology company. He gained his undergraduate degree in Business from the University of Liverpool. Ed and his family have been closely associated with Chordoma UK since his father was diagnosed with the disease in 2008.

Tamana Fayzan
Chordoma coordinator

Since graduating with a degree in biochemistry I have been fascinated by health and disease in the human body. Although there are many advances in the treatment of cancer I am aware that for many patients there is still an uncertain future. This encouraged me originally to pursue a career in research and my first post involved an extensive project in embryology and stem cell transplantation. Since then I felt that I could contribute more to research by engaging with patients and researchers – by bing ‘a link’ to ensure that patients understand about the research that is being undertaken and to facilitate researchers achieve their goals for patient benefit. I also have the opportunity to feed back to researchers the challenges that patients face (without saying I do this without breaking the confidentiality of patients)

The post of Chordoma Co-ordinator immediately attracted me: it gives me the opportunity to facilitate research. I have the time to introduce patients to the idea of how they can contribute to research in order to improve clinical outcomes, and also make them aware of the community of patients who can help each other if this is what people want. I hope to assist Professor Flanagan proactively in developing academically excellent research, to raise awareness of chordoma research.