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CANCER OF UNKNOWN PRIMARY FOUNDATION

OnHealthy

About Jo’s friends and advisers

jo_net

CUP Foundation – Jo’s friends was established in memory of Jo Symons who died with CUP in September 2006 a few days after her 46th birthday. Jo, a graphic designer, was diagnosed with cancer, and the primary site could not be identified. Different tests produced different ideas. The initial suggestion, following the biopsy of a secondary tumour, was of Ovarian cancer. This was discounted and Jo was treated initially for Breast and then Pancreatic cancer. Jo endured 3 different chemotherapy regimens over 8 months before she died. Her primary remains ‘unknown’. (For further background see CNN report.)

To her family and friends it seemed incomprehensible that, in the 21st century, it was not possible to make a diagnosis and that little was being done to promote awareness and research; or to offer information and support to CUP patients and carers.

Cancer of Unknown Primary (CUP) Foundation – Jo’s friends was registered by the Charity Commission with number 1119380 on 24 May 2007.

We are no longer accepting donations but would encourage donors to support the CUP Foundation – Jo’s friends account with The Christie Charity with a one-off donation or by  standing order form or direct debit. For one off donations, if there is no specific ‘drop down’ for CUP, then include CUP A01070 in any remarks. (The standing order and direct debit mandates are specifically drafted for CUP.)

Notes for journalists (to be updated following dissolution)

OBJECTIVES

Jo’s friends are those whose lives have been touched by CUP. For patients and carers we are friends in adversity, stronger for working together although we may be physically apart.

Jo’s friends are those who want change. We want to commit to improving the treatment of CUP patients and the end of the CUP problem. To paraphrase President Kennedy’s inspirational speech about landing a man on the moon, we will not do this because it is easy but because it is a challenge we are unwilling to postpone, and one that we intend to win.

Our mission is to ‘Make the Unknown, Known’ by:

  • Providing information and support to CUP patients and those who care for them
  • Raising awareness of CUP
  • Promoting improved diagnosis and treatment
  • Undertaking, encouraging and supporting CUP research with the ultimate goal of seeing the end of CUP

Please note: We do not offer medical advice. If you have any medical queries you should direct them at a qualified medical practitioner. We offer information which is intended to help patients – their carers, families and friends – and those who want to know more about the CUP phenomenon.

The Board

Trustees

Chairman:  Barry Hamilton B.Soc.Sc. MBA. After a career in International Banking with the Barclays Group and Standard Chartered in Canada, New York, Zimbabwe and London, Barry was appointed Director General of Canning House, a not for profit organisation which fosters economic, political and cultural links with Latin America. Since retiring from Canning House he is a trustee of one international charity and chairman  of one London charity.

Director: John Symons MBE, TD, MA, MSc, MEd, PhD. John has held appointments in Whitehall, the City of London, charities and academia. He was a member of NICE’s CUP Guideline Development Group (2008-2010) and the NCAT Peer Review Measures expert group for CUP (2011-12); and is presently a member of the MUO/CUP workstream of the NCRI Living With and Beyond Cancer Group. John is a Sloan Fellow of the London Business School and former associate professor at Henley Business School. He was married to Jo.

Rosemary Bates BA (Hons), PG Dip OCGD. Rosemary has 17 years commercial experience in the retail business with companies including Marks & Spencer, the Burton Group and Laura Ashley. Latterly her role was as Regional Franchising Manager to the Laura Ashley franchisees in Europe, South America and the USA. She advised on all areas of business development including new business start-ups, accounts and marketing. Rosemary now runs her own garden design business.

Kate Fulton Bsc (Hons). Kate joined Marks and Spencer as a graduate working in a number of commercial roles over 24 years in store management in England & Ireland, & in store support in Head Office. The latter part of her career was in the International Franchise Group advising on, & securing, merchandise for the International business. This involved liaison with M & S Franchise partners worldwide, and working with UK Buying departments to meet their needs.

Philippa McEwan BA (Hons).   Philippa has worked in publishing for over 30 years. She is currently a Publicity Director at Pan Macmillan, working across Pan, Macmillan and Picador and events planning. Philippa has been a member of the management committee for Cancer Research UK’s bi-annual London Carol Concert. Jo was her sister.

Trustees in 2023. Front L to R: Kate Fulton, Rosemary Bates, Philippa McEwan. Back L to R: Barry Hamilton, Jill Foulds (Volunteer Admin and Conference Manager), John Symons

Advisory Board

Dr Natalie Cook MBChB, MRCP, PhD is a Senior Clinical Lecturer in Experimental Cancer Medicine and Honorary Consultant in Medical Oncology at the University of Manchester and the Christie NHS Foundation Trust.  She is the medical lead for the Experimental Cancer Medicine Team at the Christie, delivering early phase oncology trials to patients, and a Principal Investigator on the international CUP trial CUPISCO (as well as being  co-investigator or principal investigator on a portfolio of over 70 trials). She has a research interest in liquid biomarkers in CUP.

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Dr F. Anthony Greco MD is Director of the Sarah Cannon Cancer Center located in Nashville, USA. Dr. Greco’s principal professional interest has been clinical cancer research and he now specialises in cancers of unknown primary origin, lung cancer and germ cell tumors. He has helped to define the complex group of patients with unknown primary cancer recognizing many subsets of patients requiring specific therapy. He has developed, or helped develop, new and improved therapies for patients with several types of neoplastic diseases, including unknown primary cancer.

Dr Sarah Ngan BMedSci MBBS PhD MRCP is a consultant in Medical Oncology working at Guys and St Thomas’ Hospital (GSTT) in London specialising in caring for patients with upper gastro-intestinal cancers, Cancer of Unknown Primary (CUP) and acute oncology.  She was appointed as consultant in medical oncology at Guys and St Thomas’s (GSTT) Hospital in 2012, and prior to this was working at the Royal Marsden Hospital, London. Dr Ngan is presently the clinical lead for acute oncology and CUP at GSTT along with network CUP lead for the London Cancer Alliance. She chairs a specialist MDM at GSTT for patients with CUP which is video-linked to units across SE London and is passionate about improving the patient pathway for CUP patients.

 Penny pic

Professor Penelope Schofield BSc (Hons) PhD MAPS is professor of Health Psychology, Swinburne University of Technology; and Honorary Principle Research Fellow, Department of Cancer Experiences Research, Peter MacCallum Cancer Centre, Melbourne, Australia, where she is the lead investigator for the Australian national collaborative CUP cohort study: ‘SUPER’.

HSW 

Dr Harpreet S. Wasan MD MBBS PhD FRCP is Consultant and Reader in Medical Oncology, Department of Cancer Medicine, Imperial College NHS Trust. He is the Chief Investigator for ‘CUPEM’ investigating the potential benefits of immunotherapy treatment for CUP patients. Previously Chief Investigator for ‘CUP-One’, which started in 2010.  Dr Wasan is on the UK National Cancer Research Institute Steering Committee for both advanced colorectal cancer and upper gastrointestinal groups, the Chair of the West London Cancer Network, and oncology advisor to the UK Drugs and Therapeutics Bulletin.

NON MEDICAL

Malcolm J. Glenn (Communications, Advertising & Marketing) has been an advertising creative director for more than 30 years, overseeing the development of creative products for clients. He is a lecturer and consultant business adviser for local colleges and the Young Enterprise charity.

J. Roger Newnham FCA  (Finance and Accounting) is a recently retired Chartered Accountant with 40 years experience, including considerable involvement with charities as a part of his practice.

EMERITUS MEMBERS

Dr Richard J. Osborne MD FRCP FRACP. Formerly consultant in Medical Oncology Hervey Bay Hospital, Queensland until December 2019 and before that at the Dorset Cancer Centre. He was the Lead Clinician for the development of the NICE Guideline for CUP. During his career Dr Osborne was awarded an ICRF Clinical Research Fellowship, NCI-EORTC Research Fellowship and a Fulbright Senior Scholarship.

Dr Maurice L. Slevin MD FRCP.  Founding Director of The London Oncology Clinic (now Leaders in Oncology Care) and Consultant Medical Oncologist at St Bartholomew’s Hospital. Dr Slevin is the author or co-author of a number of books and chapters in books; and some 200 papers in medical journals. In 1985 he joined Vicky Clement Jones in setting up the information and support charity, Cancerbackup.