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CANCER OF UNKNOWN PRIMARY FOUNDATION

Ways to support our work

This page includes guidance on fundraising, how to make donations and undertake awareness-raising:

eNews

We would very much like to send you our quarterly News letter. To receive this, please enter your eMail address in the box on the right hand side of the screen. We promise not to inundate you with material: just the News four times a year, and very occasionally a separate communication about a specific event, breaking news or something like Christmas cards. We will not pass-on your details to any third parties. This is our latest edition .

 

Sales

 Lapel badges and wristbands

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We sell the lapel badge and the blue wristband for £1 each.  The badge comes with a small backing card giving brief details of CUP.  Many supporters have used the badges to raise awareness by selling them to their families, friends and colleagues. The embossed writing on the blue wristband reads:073686 (2)

If you would like to make a purchase please contact jill@cupfoundjo.org with your address and order.  We will charge you for postage at cost.

Cards

Every year we choose a special Christmas card and the one for 2017 is shown below.  To see a larger image, click on the card. The cards will be available from the Autumn and an order form will be placed here.

Unique general purpose plain cards

Really useful plain cards, but with our logo and purpose on the back, that are ideal for ‘thank you’, condolence and general communications. Inky Snowdrops and Bloom by Alex McEwan for Jo’s friends:

cardsnowdrops    Cardblooms

cards order form

Wordsmith – the Gift of a Soul

Wordsmith cover

This inspiring book is the collected poetry of a young vet, struck down by CUP, compiled by her author mother: http://www.wordsmiththebook.com/

Donations

If you would like to make a donation please either use Just Giving; or download either a donation form or standing order form to return by post.

Donate with JustGiving

 

Gift Aid. For every pound given by a UK taxpayer, HMRC add 25p if the donation is properly Gift Aided, so this is a very valuable addition. Gift Aid happens automatically through Just Giving. On the other forms and on our charity leaflets we show the details that we need filled in, if the donor chooses to add Gift Aid. We have available also on request Gift Aid envelopes which may be helpful for some events such as funerals. For collecting cash, e.g. from selling badges, we can let you have a small cardboard collection box which is packed flat but easily erected.

CUP_Box1

Sending us money. Please do not send cash through the post but cheques with a completed Gift Aid envelope, or form that show the donor(s) details and amount can be sent to: CUP Foundation, The Fold, Lower End, Cirencester, GL7 7AH. If a cheque(s) is being written please make it out to ‘CUP Foundation- Jo’s friends’. Cheques received through the post will be acknowledged with a written response.  Just Giving donations receive a (rather impersonal) electronic ‘thank you’.

Events and Memorial Donations

Particularly for ‘personal challenges’, and memorials, may we suggest that you consider making use of the Just Giving website  to create your own fundraising page.  This allows donations to be made quickly & securely using a credit or debit card & automatically adds Gift Aid to UK taxpayers donations. This method is very useful to reach people who do not live locally to you. Your page allows you to create your own message & shows donations as they come in. It allows you also to write & send an automated ‘Thank you’ message. For personal approaches, you may find this sponsorship form helpful.

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Please contact events@cupfoundjo.org copied to supporters@cupfoundjo.org if you are planning an event. If a ‘challenge’ event we will send you a pack with a T shirt(s) and brochures included. We will also post details on the News page of our website. If you want some ‘words or phrases’ for marketing purposes or media interest you can access our current brochure electronically. There is a quick link top right of this page. Here is an example of local media being used in 2013 to raise awareness: CUP Article Jersey. If we have the details and a photo of your event we can include information in our quarterly eNews. Please send to supporters@cupfoundjo.org

Fund-raising ideas

To gain some ideas and guidance about fund-raising in general please see this document: Fund raising ideas.

You might like to see the short video we made for the 2012 Awareness Day. It features Jo’s sister, Philippa, and highlights some of the issues about CUP whilst using a particular approach to raising awareness.

How donations are used

We seek funds in, and for, the short and long term. We seek to fund small high impact projects, and in recent years have funded a pilot genetic sequencing project at Hammersmith Hospital that may help to unravel the mysteries of CUP and identify treatable mutations.

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It is important to note that clinical trials costs millions of pounds and these are outside our reach. We can have a greater impact on, the equally important, social science research projects such as understanding patient and carer needs.   A significant item of expenditure is the CUP conference (held in 2009, 2012, 2014) which brings together clinicians, researchers and others interested in CUP from across the world.

We run a ‘tight ship’ and keep our administrative expenses to a minimum. The Trustees and Staff are unpaid and we have no salaries. The office is run from the volunteer Director’s home and we have no costs for heat, light, office, etc. We do have some administrative costs e.g. insurance for public liability, postage and travel.  We devote in excess of 97p in each pound raised to our charitable objectives. For further details of our expenditure and grants please see the bottom of this page for Annual Report links.

It’s about raising awareness as much as money

Our concerns are to: raise awareness of CUP, support CUP research and provide information and support to patients and carers. This may seem like an enormous task but as Chinese philosopher Lao-tzu (604 BC – 531 BC) is reputed to have said: A journey of a thousand miles begins with one step. If CUP is to be ended it will be as a result of medical and technical expertise. But the impetus for change and the imagination to do things differently will come from you and me – people affected by CUP.

“The lesson of the last 150 years in oncology is that orthodoxy was repeatedly wrong.” Siddhartha Mukherjee in The Emperor of all the Maladies: a Biography of Cancer.

What do we want?

This is part of our wish list:

  • Best treatment. We want timely and expert assessment for those presenting with an uncertain or an unknown primary, followed by the best possible management and treatment, with continuity of care. This requires clinicians with experience of CUP and hospitals that follow the NICE Guideline on CUP (2010). Compared with a patient with a clear site-specific cancer diagnosis, the CUP patient can face problems when a hospital is not compliant with the NICE Guideline and encounter: the lack of an explicit and efficient system to manage the initial diagnostic phase; uncertainty about subsequent patient management with poor continuity of care; inadequate information about their illness; insufficient symptom control and delayed access to specialist palliative care; no cancer nurse specialist support; referral to an inappropriate site-specific cancer team leading to delays in investigation and treatment.
  • Research. CUP is a little known, under-researched phenomenon yet it is undeniably one of the ten most common causes of cancer mortality in the world. We need to break this Catch 22 where the prognosis for CUP is poor because the research needed to improve treatment is not happening. We know that CUP is unique in its unusual metastatic pattern (when compared with the pattern for known primaries) but we don’t know why. We know next to nothing about the biology of CUP. Until we understand the biology of a disease it is very difficult to treat it as the biology determines the treatment.  We need to know about the genes, molecules and chemical messengers of cancer that impact on CUP to target treatment We need research into patients, carers and clinicians experiences to identify how to manage CUP patients appropriately. It is now possible to take a sample of a person’s cancer tumour and read its genetic code. We know that cancer occurs through genetic changes. Sequencing involves reading out  the entire genetic code of a cancer genome. Understanding the molecular faults in CUP tumours will allow scientists to understand more about CUP and to tailor treatment specifically to overcome particular faults – so we need CUP sequencing research. In short, we need better diagnostic techniques to interpret and access the smallest of cancer lesions.
  • Awareness. We want to stop CUP being the unspoken orphan of the cancer world. We conducted an on-line survey of 211 CUP patients and their carers and 98% had ‘not heard of CUP until diagnosis’.  Jo’s friends aim to raise public awareness and understanding of CUP in order to trigger demand for research and to reduce the isolation felt by CUP patients in the community. We want wider recognition of the unique problems for patients facing CUP. To have an unknown cancer creates added psychosocial problems for patients and their loved ones. Patients with less common cancers report worse experiences in their pathway than those with common cancers. CUP patients need additional support through their cancer journey when sometimes the tendency is to side-line them as a medical embarrassment.
  • Cancer Nurse Specialists. We need every CUP patient to have continuity and support from a named CNS  – perhaps more appropriately called sometimes a Systems Navigator in the USA.
  • Better statistics.  The true incidence of CUP is almost certainly understated because there is little agreement on its definition; and clinicians are keen to assign a primary where possible. The coding for CUP used in hospitals and cancer registries is imprecise. It is based on coding at arbitrary time points in the diagnostic pathway. Arguments about research funding and treatment priorities tend to be won by the evidence. In the CUP field the statistics are ambiguous. We need to be able to quantify, and make distinctions between, metastasis of undefined origin, provisional CUP and confirmed CUP in Hospital Episodes Statistics that provide the source data for Cancer Registries.  CUP is the 5th commonest cause of cancer mortality in England and Wales yet this fact is sometimes ‘hidden’ in national statistics. We want the publication by Cancer Research UK and the National Cancer Intelligence Network to be ‘up front’ about CUP in cancer ‘league tables’.
  • Better pathology is needed to recognise and validate molecular profiling for CUP to allow more targeted therapies for this diverse group of patients.

Steps you can take

Start the conversation! Talk to anyone you can so that they recognise that CUP exists and that it is a significant but little known phenomenon. Explain that it is a problem which is resolvable but only if there is a demand for action. It may seem a minority problem to doctors and researchers but it is hugely significant to those who are touched by it.

The number of people in the UK who die from CUP each year – about 10,000 – is roughly equivalent to 20 jumbo jets full of people. If 20 jumbo jets fell out of the sky each year over the UK because the reason could not be traced you can be sure that people would take notice and demand action!

Annual report and accounts

You can see all our annual reports on the Charity Commission website. The quickest way to find our entry is to search by our charity number:1119380. These reports show our annual income and expenditure and note our achievements each year set against our objectives.

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