E-news - launch edition

Our New Look!

Following feedback from some of our supporters about our last newsletter, we have taken the decision to send our updates in      e-mail format from now on. We hope you like this new approach and find it easier to read and to access the links. We would welcome any thoughts you have and we can be contacted on the e-mail addresses at the bottom of this page.

Latest Updates

NICE Guidelines

The NICE Guideline for the management & treatment of CUP – presently in draft for final consultation - will be introduced on 28 July 2010. This is the most important thing ever to happen for CUP in England & Wales (NICE does not cover Scotland and N. Ireland but it is likely that the other national authorities will be informed by this guidance). Of course, we have to recognise that this is Guidance and not mandatory but initial reactions to the recommendations are encouraging. Jo’s friends is a Stakeholder and the Director has been a member of the Guideline Development Group since it started work in 2008.

Read more .... 
 

CUP-One Trial

Trial centres are now open in a number of hospitals for the start of this important multi-centre, Phase II trial which is being lead by Dr Harpreet Wasan – a Member of our Advisory Board.

The study, of which Jo’s friends is a stakeholder, is in two parts: the aim of the first part is to validate new tools in diagnosis (including molecular profiling, metabonomics of blood and urine for response and toxicity prediction and a proposed immunohistochemistry classifier).

The hope is that, in the future, scientists can find a diagnostic indicator of the primary site simply, rather than subjecting the patient to a whole barrage of investigations.

Read more....
 

Research with Southampton University into Patient Experience

The project we have been trying to get underway with Southampton University to triangulate the experiences of CUP patients, their carers and treating physicians has run into some difficulties. The good news is that it is still going to happen. (The project developed from a discussion between Jo’s friends Director and the Head of the Macmillan Research Unit at the University of Southampton.)

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Fundraising

2010 started with considerable fundraising activity and has continued apace. We have been amazed by the athletic feats of some of our supporters. Our thanks go to Natalie Mirfin who raised £718 in sponsorship by running a kilomathon in March.

Our Chairman's nephew Nicholas Lane and his friend Andy Davies ran the Stockholm Marathon in May. They raised an amazing £1893 for us. We just hope that our Chairman kept his promise and took them out for a slap-up meal when they got back!

Well done to Margaret Hallah and Jo's sister Philippa who took part in 'Just Walk 2010'. They raised £922 for us and would highly recommend this annual fund-raising event, not least because they ended the day with a slap up meal of fish & chips with copious quantities of wine.

A big thank you must go to the PPA of St. Columba's College in St. Albans who kindly donated £800 to Jo's friends from the profits of their Ladies Night in February. To Martin Smith who ran the Reading Marathon in March and to Roland Dopson who did the Great Manchester Run in May in memory of Elaine Ankers.

Future Events

Good luck to Daniel Ankers who will be taking part in the Outlaw Triathlon on August 8th in memory of Elaine Ankers. He will swim 2.4 miles, cycle 112 miles and, if that wasn't enough, will then run 26.2. miles. He is aiming to raise £2000 and has so far got £729. If anyone would like help Daniel reach his target click here for his JustGiving page.

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