AMMF News

CC Awareness Month 2015 Guest Posts

Thank you to each person who took their courage in both hands and contributed a Guest Post for AMMF’s Facebook page during Cholangiocarcinoma Awareness Month 2015. What incredibly moving stories were shared by those who have lost precious people to cholangiocarcinoma, from those currently undergoing treatment and from all too few “survivors”. It was heartwarming to see the kind and supportive co...

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AMMF Awards Research Fellowship

AMMF awards a Research Fellowship to Dr Pui Man (Gemma) Choy AMMF has agreed to fund a Research Fellowship at the Institute of Hepatology London for a period of two years, beginning March 2015. Grants totalling £82,060 will be made over this two year period to enable Dr Pui Man (Gemma) Choy to continue research on the molecular mechanisms of cholangiocarcinoma development that AMMF has already been suppor...

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BLT’s ‘Your Liver’ Campaign

AMMF is pleased to support the 'Your Liver' campaign, a British Liver Trust campaign in partnership with MediaPlanet UK. Launched on 13th March, with a supplement in The Independent and a dedicated website, the aim of the campaign is to highlight liver diseases and is a good opportunity to raise the awareness of cholangiocarcinoma, one of the least known and poorly understood of the liver diseases. ...

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AMMF at Imperial College 11.02.15

This report on the research presentations and Q&A session at AMMF's event at Imperial College London on 11 February, has been written by Rebecca Morement, who is currently working as an intern with the charity. A philosophy graduate of the University of York, Rebecca has a keen interest in bioethics, and is gaining a real insight and understanding of the problems associated with cholangiocarcinoma. ...

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CCF Conference, 5 & 6 February, Salt Lake City, Utah

As part of Cholangiocarcinoma Awareness Month, AMMF's Helen Morement, together with Dr John Bridgewater and Professor Juan Valle from the UK, joined with scientists and clinicians from across the US at The Cholangiocarcinoma Foundation's conference in Salt Lake City, to hear of the progress being made on both sides of the Atlantic towards our shared goal - a cure for cholangiocarcinoma. Amongst the emine...

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Cancer52 and Rarer Cancers – Raising the profile

AMMF was represented by Helen Morement at Cancer52's event on 03 March 2015, the aim of which was to raise the profile of the rare and less common cancers at a key time in cancer strategy development ... Speakers included Daniel Ratchford, Chief Executive of Quality Health, Sean Duffy, National Clinical Director for Cancer, and Dawn Green a pseudomyxoma survivor who bravely spoke of her experiences of li...

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Saatchi Bill axed …

The Liberal Democrats have vetoed a proposed law seeking to give doctors legal protection to use innovative treatments on patients when other options have been exhausted. The Lib Dem Health Minister, Norman Lamb, said he wanted to avoid “the risk of unintended consequences” of Lord Saatchi’s medical innovation bill, which went unopposed in a third reading by the House of Lords and was set to go to ...

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AMMF at Imperial College London

Information for all attendees at the AMMF event at Imperial College London on Wednesday, 11 February, 2015: If you have requested a place at this event, by now you should have received a confirmation email (as at 9 February)  with venue details, and a copy of the day's programme.  If you haven't received an email, please see below. The final details of the venue and the day's programme are as follows: ...

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February is CC Awareness Month

  During February 2015, AMMF will be redoubling its efforts to raise the awareness of cholangiocarcinoma (CC) throughout the UK and beyond. Throughout the month we will be awareness raising, fundraising and sharing information.  Look out for: • Daily Guest Posts on AMMF's Facebook page. • New information on research AMMF is supporting. • AMMF's exclusive day at Imperial College. ...

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AMMF at the Cancer52 Parliamentary Event

"The hidden majority - improving outcomes for people with rare and less common cancers ..." This was the title of the Cancer52 event, hosted by John Baron MP, Chairman of the All Party Parliamentary Group on Cancer, held in the House of Commons on 10th December 2014. Why "The hidden majority"?  Simply, this describes the shocking fact that 54% of cancer deaths in the UK are attributable to the rarer a...

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AMMF supports Imperial’s CC Biomarker Repository

Following recent discussions, AMMF has now approved a grant of £30,000 to help support the national cholangiocarcinoma biomarker repository at Imperial College London. This funding will help to employ a technician who will log the receipt of existing samples that have already been collected at 8 sites* around the UK, plus new ones as they arrive, register in detail each sample and the patient information ...

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MDT – the CC patient’s perspective

A report on AMMF’s presentation at the ESSO-BASO* Cancer MDT Course, Liverpool, November 2014 By Helen Morement   (To view the course programme, click on the image above.) I was invited by Mr Hassan Malik, Consultant Hepatobiliary Surgeon and Clinical Lead at University Hospital, Liverpool to speak to an audience of surgeons at the Cancer MDT Course, on 01 November 2014, on the subject, "MD...

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A new study highlighting early BTC symptoms …

For the first time, a study on the early symptoms of pancreatic and biliary tract cancer (bile duct cancer/cholangiocarcinoma) in patients diagnosed with these diseases has been carried out and the findings have now been published in BMJ Open1  in a paper entitled, "A case-control study comparing the incidence of early symptoms in pancreatic and biliary tract cancer"2. This is particularly interesting t...

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Progress report from Institute of Hepatology

In May 2013, AMMF agreed a research grant of £34,800 with Professor Roger Williams, Director of The Institute of Hepatology, London. To support the work of Dr Salvatore Papa and his team on “Understanding the molecular basis for the development of intrahepatic cholangiocarcinoma.” The grant is to be given in three parts at annual intervals, the first instalment was made in 2013 with, as agreed, a pr...

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AMMF supports research in Edinburgh

During an informative visit in April 2014 to the Scottish Centre for Regenerative Medicine, University of Edinburgh, AMMF's Helen Morement met Professor Stuart Forbes and his team who are working on novel cholangiocarcinoma research. They are studying the macrophages that help to drive intrahepatic cholangiocarcinoma, including the signals involved (Wnt and Notch) and, based on the results, will work on the...

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AMMF backs C52 Manifesto

Autumn is coming, the party political conference season is underway, and thoughts are turning to the election on the horizon … With more than 150,000 people diagnosed with a rare and less common cancer across the UK in 2011i, and with these cancers accounting for 75,000 cancer deaths in 2012, Cancer52* the alliance of 80 rarer cancer charities, of which AMMF is one, says that rare and less common cance...

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AMMF signs Joint VBA Statement

Following the recent announcement by the Department of Health concerning the Cancer Drugs Fund (CDF), many of the member organisations of Cancer52*, including AMMF, were concerned by the section regarding the removal of clinically effective drugs from the CDF should another drug be deemed more clinically effective, and by the section concerning the future of the Fund after March 2016. (To read the DoH an...

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CC gets a double page spread

It rarely happens this way round, but AMMF was recently contacted by Alan Shaw, the lead reporter at The Weekly News, who said he had just discovered a disease he found to be, "... intriguing for us as it's not something of which I was previously aware, and the figures are truly frightening."  The disease? Cholangiocarcinoma. Alan offered to run a double-page spread in the health section of The Weekly N...

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AMMF’s further grant for BI-010 research

The BI-010 biomarker work continues ... Following promising initial results from the BI-010 cholangiocarcinoma biomarker research being carried out by Dr Hayley Whitaker and her team at the Cambridge Research Institute, AMMF has now agreed to a further grant of £10,400 to be given over 2 years, to enable this work to continue. To read about this further BI-010 work and details of the grant application,...

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Biosamples and CC Biobanks …

AMMF liaises with The Cholangiocarcinoma Foundation in the US where and when we can, but it is important to bear in mind that what happens in the US re treatments, research, etc, can at times be very different to the situation in the UK. For example, after the CCF recently put out a request for individuals to donate samples to the Mayo Clinic’s international biorepository, AMMF was asked to help locate...

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GP Awareness Campaign to continue …

With the incidence of cholangiocarcinoma (CC) markedly increasing and many younger people now being affected, it is vital that GPs are made aware of the existence of this disease, its symptoms and that, most importantly, time is of the essence in achieving a diagnosis so that the patient has the best possible chance of life saving surgery. During Cholangiocarcinoma Awareness Month this year, (February 20...

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Cancer52’s briefing paper on Orphan Medicines

Cancer52, the alliance of rare and less common cancer charities of which AMMF is an active member, has published a briefing paper on Access to Orphan Medicines in the UK, today 5th June 2014. More deliberation and less maths - Making reasonable decisions about access to orphan medicines in the UK In summary: Orphan medicines treat diseases that affect no more than 5 in 10,000 people in Europe. Ultra-orp...

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Immune cell therapy – the answer to CC?

There’s been a huge amount of press coverage over the last week about the work of researchers at the US National Cancer Institute and the success they have achieved in harnessing a person’s own immune system to fight cancer. Of great interest to all of us, of course, was that the patient who received this treatment had an advanced cholangiocarcinoma, which had spread to her liver and lungs, despite un...

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Canopies UK Choose AMMF

We are delighted to report that Canopies UK, the UK's leading supplier of outdoor canopies, has chosen AMMF as their charity to support. Jason Eastwood, Sales Director at Canopies UK, said “We’ve been discussing supporting a charity for some time, and I’m glad to say it was a unanimous decision - we would like to support AMMF.” Since losing his wife, Kelly, to cholangiocarcinoma in 2011, Jason a...

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Viewpoint from Thailand

The incidence of cholangiocarcinoma is increasing, not only in the UK but throughout the world - it is a global problem.  Following the recent 3-day  international cholangiocarcinoma workshop in Thailand* where perspectives and experiences on CC amongst UK and Thai researchers were shared and opportunities for new and potential research were discussed, AMMF has formed links with researchers and special...

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