AMMF News
AMMF’s Newsletter just out!
Time for an update ... It’s been two years since AMMF's last newsletter, so more than time for an update! In reviewing the last two years for the newsletter, successful would seem an odd word to use when we are concerned with such a devastating disease as cholangiocarcinoma, yet we have seen success and improvement in almost every area – awareness, diagnosis, treatments. Still a hard road to trave...
Read MoreGolden Fundraisers
Beryl and Bill Jones celebrated their Golden Wedding Anniversary on 16 December 2013 - and it was a very special and remarkable one in more ways than the obvious! Six years ago Beryl was diagnosed with cholangiocarcinoma - it was at an early stage, so she was able to have life saving surgery and return to living life to the full. With their milestone anniversary approaching, Beryl and husband Bill decide...
Read MoreAMMF’s external activities – a year end summary
AMMF is now recognised nationally and is rapidly becoming the 'go to' organisation for cholangiocarcinoma (CC), both amongst the general public and within medical circles. For some time now, AMMF has appeared on the NHS Choices website and, earlier in 2013, the charity took part in both the NHS services commissioning review for HPB cancers, and in the NCPR (National Cancer Peer Review) consultations rega...
Read MoreNCRI & Cancer52 research spend report published
A new report from the National Cancer Research Institute (NCRI) and Cancer52, 'Research into less common cancers’ was published today, 4th November 2013. This shows, for the first time, the level and type of research investment in rare and less common cancers by members of Cancer52. AMMF, as an active member of Cancer52, was one of the twenty-five charities who participated by submitting data for an...
Read MoreCancer52 Annual Briefing
AMMF is an active member of Cancer52, an alliance of those organisations representing the rarer and 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. Formed at the request of the then National Cancer Director, Professor Sir Mike Richards, to input into the Cancer Ref...
Read MoreJake’s campaign expands …
Earlier this year, Jake Bishop lost his much loved grandfather, Adam Reay, to cholangiocarcinoma just a month after diagnosis. This was a great shock to the family because, as Jake explains, “There was almost no sign that he was ill and he was still an active and caring grandfather.” Since then, and despite his young age, Jake has been determined to raise the awareness of cholangiocarcinoma and to ra...
Read MoreSaatchi Bill moves to full consultation (22.11.13)
Lord Saatchi's Medical Innovation Bill moves to full consultation On Friday, 22 November, 2013, the Government agreed to full consultation on the Saatchi Bill. The Bill has won the backing of Health Secretary Jeremy Hunt, who said it had the power to 'lead to major breakthroughs, such as a cure for cancer.' In his statement Mr Hunt said, 'It is precisely because this issue is so important, bec...
Read MoreCRUK Your Day, Your Say
By Helen Morement Cancer Research UK are holding 'Your Say, Your Day' events on 6th September 2013 across the UK to inform those affected by cancer about their latest research, information and campaigns, and to let them know how they can help make a real difference. Researchers, nurses and members of the CRUK team will be available during the day, including over lunch, to talk to and share ideas with...
Read MoreGrant for AMMF from Law Firm’s Trust
AMMF is delighted to have received a grant of £1,000 from the Wright Hassall Charitable Trust, the charitable arm of Wright Hassall LLP. A well respected and experienced law firm based in Leamington Spa, Warwickshire, Wright Hassall LLP has the vision, “to be the best legal practice in the Midlands, nationally recognised for the quality of our work, the quality of our service and the quality of our ...
Read MoreDiscovering the Aintree Attitude
by Helen Morement Through my work with the National Cancer Research Institute(1) Hepatobiliary Sub-Group where clinical trials are planned and discussed, I had already met Mr Hassan Malik(2) and Professor Dan Palmer(3) from Liverpool, and knew of their in depth knowledge and expertise with cholangiocarcinoma. So I was very pleased when they invited me to Aintree Hospital, Liverpool to meet other memb...
Read MoreTowards a Thai Connection
by Helen Morement of AMMF For some while AMMF has been helping to support the collaborative research work between Imperial College London and Khon Kaen University Hospital, Thailand, so I was delighted and honoured to be invited by Professor Simon Taylor-Robinson* of Imperial College to meet a delegation of specialists from Khon Kaen on 6 June, and to have the opportunity to tell them about the work of AMM...
Read MoreRCF Patient Empowerment Day
The NHS mantra ‘no decision about me, without me’ was the theme of this, the first of the Rarer Cancers Foundation’s Patient Empowerment days, held in London, 03 June 2013. Andrew Wilson, Chairman of the Rarer Cancers Foundation set the scene and introduced the first speaker, Professor Martin Gore of the Royal Marsden NHS Trust. In a day designed to empower patients by explaining that they now h...
Read MoreThe NHS Reforms explained …
At a recent Cancer52 meeting, Sasha Daly, Head of Policy at the Teenage Cancer Trust, gave a presentation on the reformed NHS England, what the structures are, how they link to each other and how they are mapped out both nationally and regionally. Sasha had clearly done her homework, as she did an excellent job of explaining the complex new reforms. Her explanatory visuals are amongst the clearest we hav...
Read MoreImperial CC Research Update
AMMF visited Imperial College London on 21st March, at the invitation of Professor Simon Taylor-Robinson and Dr Shahid Khan, to meet the cholangiocarcinoma research team and to receive an update on the CC research work which is being undertaken there and which AMMF helps to fund. Our discussions were wide ranging and it is very obvious that cholangiocarcinoma is now well and truly on the map as far as re...
Read MoreCancer52 Annual Review 2012
Cancer52, the organisation providing “the common voice for less common cancers”, has made substantial progress in the short years since its inception and is dedicated to ensuring that those representing rare and less common cancers do not go unheard. They believe that rare and less common cancers must have a presence and a voice within every national cancer initiative. It is one of their aims to pr...
Read MoreCC: An Insidious Cancer
Dr Abigail Zabron, AMMF’s Research Fellow at Imperial College London, has produced a paper entitled, “The challenge of cholangiocarcinoma: dissecting the molecular mechanisms of an insidious cancer” which has just been published online in, "Disease Models and Mechanisms". The aim of this paper is to provide an overview of the various areas of basic CC research that has been covered in recent years...
Read MoreThe Indigestion Question …
During Cholangiocarcinoma Awareness Month, CC Symptoms were covered on Day 5 of our Facebook Facctoid feature: "CC’s symptoms can be vague … Because cholangiocarcinoma (bile duct cancer) arises from the bile ducts, either within the liver or after the main bile duct leaves the liver and links the liver to the duodenum, the commonest symptoms are due to blocking of the flow of bile in the bile ducts -...
Read MoreLord Saatchi’s Cancer Initiative/Updated 21.05.13
'Cancer doctors need freedom to innovate' Lord Maurice Saatchi, whose wife Josephine Hart died from peritoneal cancer in 2011, is calling for the law relating to cancer treatment to be changed. He describes the current law as a 'barrier to progress in curing cancer' and says doctors are deterred from trying new forms of treatment in case they are sued - they often know that standard procedures are not a...
Read MoreFacctoids – February 2013
What are Facctoids? During February’s Cholangiocarcinoma Awareness Month there were daily feature posts on AMMF's Facebook page - Guest Post of the Day, Fundraiser Pic of the Day, and ... Facctoids. What are Facctoids? They're snippets of information on every aspect of cholangiocarcinoma, all the facts and figures, from symptoms and methods of diagnosis to treatments and current areas of research. ...
Read MoreYour Inspirational Guest Posts
During February’s Cholangiocarcinoma Awareness Month, we had a fantastic response to our Facebook Guest Post of the Day feature! 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. Undoubtedly, many tears were shed over these posts - both in the writing and the reading - fro...
Read MoreHolby City patient has CC!
On last night's episode of BBC1's Holby City (5th March) a patient was actually diagnosed with cholangiocarcinoma! OK, so the situation was somewhat improbable - the symptoms, path to diagnosis and MDT meeting were no doubt far removed from most people's experiences ... but the words bile duct cancer and cholangiocarcinoma were spoken (albeit just once each!) on national television. Many comments comi...
Read MoreDr Zabron’s Mayo Report
AMMF's Research Fellow, Dr Abigail Zabron, visits the Mayo Clinic, USA Dr Abigail Zabron, the Imperial College London Research Fellow funded by AMMF*, was awarded the Dame Shelia Sherlock travelling fellowship in Hepatology 2012. This enabled her to spend a month at the Mayo Clinic, Minnesota, USA, last autumn. Dr Zabron's hosts were Professor Greg Gores and Dr Lewis Roberts, both clinician-scientists w...
Read MoreTransplantation – where are we?
Liver transplantation for CC in the UK - where are we? The Mayo Clinic in the US has for some time shown very positive results with their programme of liver transplantation for cholangiocarcinoma, albeit with very carefully selected patients who are subjected to a stringent pre-transplant treatment protocol. (Five year survivals of over 70% of these patients has now been reported.) In the autumn of 2011...
Read More“Our CC Family” Launches Today
There is a new section on AMMF's website, Our CC Family ... This is a family photo pinboard for everyone to use. If your life has been touched by CC in any way - if you’re a patient, carer, friend, family member, supporter, fundraiser – then it’s for you. We want to show that it’s real people who are affected by this disease – and give them a chance to say something about it … (To go to...
Read More
