AMMF News
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 ...
Read MoreAMMF 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: ...
Read MoreFebruary 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. ...
Read MoreAMMF 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...
Read MoreSarah climbs Kilimanjaro for AMMF
After Sarah completed her fundraising climb of Kilimanjaro, she sent us this report on her amazing adventure: My time climbing Kilimanjaro My name is Sarah Smith and I have just turned 25. I wanted to thank everyone who has been kind enough to sponsor me on my recent adventure. My close friend and colleague Kathryn Swain was diagnosed with bile duct cancer whilst I was travelling across the United St...
Read MoreAMMF 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 ...
Read MoreMDT – 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...
Read MoreA 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...
Read MoreProgress 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...
Read MoreAMMF 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...
Read More“Give us your best shot” results are announced!
"Give us your best shot" Throughout summer 2014 we've loved seeing the imaginative photos that have been submitted for our photo competition. The only rule was that something AMMF - wristband, t-shirt, etc - should be visible in the photo. Selecting the winners was a difficult process as they were all so good, but this is the final choice (click here or on the image to make larger): Thank yo...
Read MoreAMMF 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...
Read MoreCC 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...
Read MoreAMMF’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,...
Read MoreBiosamples 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...
Read MoreLondon Marathon 2014
AMMF's runners for the 2014 London Marathon were, Chris Allum, James Gesner, Paul Miller and, a last minute member of Team AMMF, Ian Blackwell. Chris Allum and his family have been fantastic supporters of AMMF for several years now. This was his 2nd time running the London Marathon for AMMF, and he had his good friend of some 20 years, James Gesner, running with him too, in memory of Chris’s Dad, C...
Read MoreCancer52’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...
Read MoreImmune 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...
Read MoreCanopies 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...
Read MoreViewpoint 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...
Read MoreTrinity College report on AMMF’s Dublin visit
Trinity College School of Medicine reports on AMMF's visit to Dublin Just before Christmas 2013, AMMF's Helen Morement and trustee Harry Corrigan were delighted to be invited to visit St Luke's Hospital in Dublin to meet Dr Charles Gillham and members of his team, and to receive a generous donation of 10,000 euros, raised for the charity in memory of Professor Donal Hollywood, their much loved and es...
Read MoreILCA International CC Guidelines
International "Guidelines for the diagnosis and management of intrahepatic cholangiocarcinoma" In 2012, The International Liver Cancer Association (ILCA) decided to produce their first ever International Guidelines on liver cancer and chose to do this on cholangiocarcinoma. An international panel of CC specialists* from five countries, including Dr Shahid Khan and Dr John Bridgewater from the UK, collab...
Read MoreCC Awareness Month 2014 Guest Posts
Once again this year we had a fantastic response to our Facebook Daily Guest Post feature during February, Cholangiocarcinoma Awareness Month. And what incredible posts they were – telling of love, courage and support, of so many people lost to this ruthless disease, and of the appalling lack of knowledge there is of CC. The Guest Post feature attracted an enormous amount of attention, and many sup...
Read MoreAMMF & the Thai CC Workshop
Cholangiocarcinoma Workshop - Khon Kaen, Thailand AMMF's Helen Morement has been invited to present the work of the charity at the Thai workshop, supported by the British Council and the Thailand Research Fund and organised by the Faculty of Medicine, Khon Kaen University, "Cholangiocarcinoma: Shared disease burden in the UK and Southeast Asia", which is being held in Khon Kaen, Thailand, between March 12t...
Read MoreAMMF & Cancer52
AMMF's Helen Morement is appointed to the board of Cancer52 For several years, AMMF has been an active member of Cancer52* – the umbrella organization providing “the common voice for less common cancers”, working together to address the inequalities that exist in policy, services and research, and to improve outcomes for patients with these highly challenging diseases. Through Cancer52, AMMF has ...
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