What are we doing?
In addition to supporting patients and carers through this website, Jo’s friends are responding to opportunities to raise the CUP profile and support CUP research. Since becoming a charity in May 2007 we have become:
- Stakeholders in NICE's clinical guideline for CUP - the instructions for all NHS cancer networks in England, Wales, and N. Ireland on the management and treatment of CUP patients. The Director of Jo's friends is also a member of the CUP Guideline Development Group. (This is a very thorough process which will not come to fruition until the Summer of 2010).
- A member of the Research Reporting Group for a new multi-centre (Phase 2) translational and clinical CUP trial. Through Jo's legacy, increased by Jo's friends, we have supported this CRUK-funded research with some £15,000.
- Partners with Southampton University (School of Nursing & Midwifery), palliative care experts and the Macmillan Research Unit to undertake research into patients, carers and health care professionals experiences of CUP. The project which begins in October 2008 is supported by a £77,000 grant from the Dimbleby Cancer Care Research Fund.
- Involved with Cancerbackup in producing hard copy patient information on CUP for distribution to every cancer centre in the UK.
- A Member of Cancer 52 - the less common cancers alliance, an umbrella group representing the interests of lesser and rarer cancers. Cancer 52's work in progress includes representation on the Government's Cancer Reform Strategy.
Project pipeline. We have a number of intentions for the future at different stages:
- Cancer of Unknown Primary - light at the end of the tunnel? A major CUP conference in London in 2009 bringing together members of the medical profession in Europe with an interest in CUP. Chairman and Keynote Speaker (from the USA) already signed-up. Sponsorship presently being sought.
- Telephone nurse. We have a long term ambition of being able to provide a CUP-dedicated nurse to answer questions about CUP from patients and carers. This is likely to be the subject of a specific fund-raising campaign.
Message board
Gold, Frankincense and Myrrh. Gold is used in cancer treatment with radio frequency waves; extracts of Frankincense have been shown to be toxic to cancer cells; and Myrrh has been used in breast and prostate cancer.
Meeting Space
Join others affected by
CUP to share information
& gain support in a moderated forum
Events
Kate and Rebecca’s half marathon run raises £2,000 through JustGiving
