Karen has over 20 years’ experience in nursing, with a particular interest and expertise in palliative care nursing through her professional role in a hospice.
Karen was diagnosed with a leiomyosarcoma in 2006 and immediately sought out other people similarly affected by sarcoma, leading her to Sarcoma UK where she became a founder trustee.
Karen also established and continues to organise the London Sarcoma Support Group, a thriving group of sarcoma patients, relatives and clinical nurse specialists who meet monthly.
Karen is particularly interested in encouraging two-way conversations between patients and professionals. She has been a consumer member on the National Cancer Research Network’s sarcoma clinical studies group where she represented sarcoma patients’ perspectives on issues such as the practicalities of taking part in clinical trials.
Andy has 30 years’ experience working in the Finance environment. The first 15 years were as an auditor, and since 2000 as the Group Financial Controller of Huntswood, a highly profitable company that provides specialist resourcing and consultancy services.
In November 2014, Andy’s son Tom was diagnosed with Ewing’s sarcoma and Tom took the decision to raise as much money as possible for Sarcoma UK. Sadly, Tom passed away in September 2015, and Tom’s Fund now stands at an amazing £20,000.
Andy says “I believe that my accountancy skills together with my involvement in fundraising at Maidenhead Rugby Club, and my experience of witnessing the effects of sarcoma on my son, will allow me to make a valuable contribution to Sarcoma UK”.
Rob is Professor of Orthopaedic Oncology at the Royal Orthopaedic Hospital, Birmingham. He is one of the leading authorities in the world on sarcoma and has helped pioneer the use of extendable prostheses and the use of new surgical techniques such as irradiation and re-implantation of bone to treat sarcoma. Rob has chaired the National Cancer Research Institute’s Sarcoma Clinical Studies Group and the National Cancer Intelligence Network’s Sarcoma Group as well as being a founder of the British Sarcoma Group (association for professionals in the sarcoma field).
Rob is particularly interested in how patients with visible lumps and bumps that could be sarcoma, are identified and treated earlier. He is renowned in the sarcoma world for developing the innovative ‘golf ball’ idea as a way of encouraging earlier diagnosis of sarcomas. Semi-retired (but still working as hard as ever), Rob brings his enthusiasm, ideas and considerable experience to Sarcoma UK as a trustee, to help us in our work to improve the experiences of sarcoma patients.
Leigh works in event management as well as managing her busy household of four children, husband, dog and extended family. Leigh’s family and friends, under the banner of “Team GIST”, are one of Sarcoma UK’s most successful fundraising teams.
Leigh became involved with Sarcoma UK when her daughter was diagnosed in 2009 with paediatric wild-type GIST (gastrointestinal stromal tumour). She says: “Sarcoma UK have been a huge support to our family and it is a great honour to be a trustee. I enjoy supporting such an active and progressive organisation, helping to support others facing a similar situation to our own”.
Leigh is usually found hanging over the barriers at running and cycling events, cheering on Sarcoma UK’s runners and cyclists!
Ian is the owner at SILO Consulting Ltd, based in York. Ian has first-hand experience of sarcoma, having undergone surgery in 2010 to remove a tumour. Ian says: “Dealing with pre- and post-medical intervention and balancing this with a young family of three boys and a busy work life gives me a unique patient perspective.” Ian’s motivation to become a trustee was driven by the first-hand knowledge that early diagnosis has a genuine impact on survival rates and his desire to help Sarcoma UK increase awareness and knowledge.
Ian has been known to don his lycra shorts and take part in cycling challenges to raise money for Sarcoma UK.
Ian trained at Cambridge University, where he read Natural Sciences, and subsequently studied medicine at King’s College Hospital Medical School, London. His decision to specialise in oncology was made while working as a junior doctor at the Royal Marsden Hospital.
After research for his MD at the Institute of Cancer Research and completion of specialist training, he was appointed Senior Lecturer in 1989 and worked for many years on the development of new anticancer drugs, such as temozolomide, abiraterone acetate, everolimus, angiogenesis and HSP90 inhibitors.
Ian has also been treating patients with sarcoma for 25 years and has conducted many clinical trials in this area, most notably as part of the international team which performed the initial study of imatinib for patients with gastrointestinal stromal tumour (GIST). This drug has transformed the lives of thousands of people with GIST and helped turn it into a chronic manageable disease for many.
Ian was a founder member of the British Sarcoma Group and President until 2015 and was for many years Head of the Sarcoma Unit at the Royal Marsden.
Sharon is a former Executive Director and Chief Operating Officer at Edelman, the world’s largest PR agency. Having worked in communications for the last 18 years, Sharon is passionate about getting people to think and act differently and she just loves a new challenge
Sharon says, "I know how important early diagnosis is and I’m very excited about the opportunity to work with the rest of the team as a trustee to raise the profile of Sarcoma UK."
Jo is a Sarcoma Advanced Nurse Practitioner, the lead for sarcoma nursing services, and a key member of the South Wales Sarcoma Multi-Disciplinary Team.
She was the first sarcoma specialist nurse to be appointed in South Wales in 2012, providing a unique and expert resource for patients, their families, and professional colleagues. Jo has successfully introduced a new rapid access, one-stop diagnostic clinic approach to sarcoma service provision in South Wales.
Jo receives direct referrals of patients with suspected sarcoma from colleagues in both primary and secondary care and is responsible for managing their treatment and care. She also runs regular education programmes for GPs. Jo brings excellent experience of sarcoma services in a devolved nation to Sarcoma UK’s Board of Trustees.
Jeff is a consultant medical oncologist at the Beatson West of Scotland Cancer Centre; and former National Lead Clinician for the Scottish Sarcoma Network. The Network was formally launched in November 2004 and its aim is to optimise the management of patients with sarcoma in Scotland.
Jeff says “In my role, I recognise some of the limitations of patient care that the NHS delivers. Working with third sector organisations is a very good way to enhance the patient experience with the NHS and I feel that Sarcoma UK are very adept at such work. Moreover, such partnership work provides a useful professional resource and voice for a diverse group of healthcare professionals.”
Sarcoma UK is registered as a charity in Scotland and provides support and information to a growing number of people affected by sarcoma in Scotland.
Sam is a barrister working principally in the area of child protection and was called to the bar in 1995. As well as her professional life at the bar, she is kept very busy with her family including her two young children.
In 2009, Sam lost her best friend Adrian to sarcoma, age 42. Sam says “Adrian is the inspiration for me to become involved with, and assist Sarcoma UK in whatever way I can. Adrian approached his illness with courage, determination and a very positive spirit and left behind a young daughter and lovely wife.”
As well as being a trustee, Sam can also be persuaded on occasions to get on her bike for Sarcoma UK. In 2015 she was part of Team Sarcoma in the Prudential Ride 100,.
Glyn is a journalist who decided on his future career direction after he interviewed former Manchester United manager Alex Ferguson, for his student newspaper. In 1999, Glyn co-founded the communications agency Touchline, which produces the publications, websites and branding of governments as well as various international arts, trade, travel and sports organisations. Glyn has also edited the last five editions of the official magazine of the Olympic Games.
In December 2010, Glyn was diagnosed with a myxoid liposarcoma. As a trustee, he is particularly interested in helping Sarcoma UK enhance the quality of the information available to people affected by sarcoma. Glyn is a keen sportsman and lives in Hertfordshire with his wife and two children.