AMMF News
“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 MoreCC Awareness Month 2013 Press Release
At the start of this year's Cholangiocarcinoma Awareness Month, AMMF is circulating a press release drawing attention to the recently published Guidelines for the Diagnosis and Treatment of Cholangiocarcinoma in the UK, Drawn up by a group of leading GI specialists, and developed with the support of AMMF and The British Liver Trust, these guidelines have been comprehensively updated for the first time i...
Read MoreSpecialist Viewpoint No 5 – Pathology
Specialist Viewpoint – or cholangiocarcinoma as they see it … Article 5 – Pathology AMMF is running a series of articles from specialists giving their viewpoint on cholangiocarcinoma diagnosis, treatments and research. The fifth article in this series, covering pathology, falls into the diagnosis category. We are delighted that Rob Goldin, Professor of Liver and GI Pathology, Imperial College L...
Read MoreValue Based Pricing – a Position Statement
Value Based Pricing (VBP) was proposed by Government in 2010 as a key way to deliver improved access to medicines. But detail is lacking, even though confidential Department of Health (DH) and The Association of the British Pharmaceutical Industry (ABPI) negotiations have recently commenced. This is a critically important moment with respect to research and drug development in the UK. It is vital that ...
Read MoreAMMF receives a legacy
For the first time, AMMF has been privileged to receive a legacy from a will. AMMF came into contact with Chris and Nicki Jackson in early July 2011 when Chris had just been diagnosed with cholangiocarcinoma – they became AMMF supporters and remained in close touch throughout all Chris's treatments. Chris was a man with a love of life and for the people in his life and, with Nicki by his side, he ret...
Read MoreQuerying the CC diagnosis to treatment pathway
Helen Morement from AMMF attended Cancer52’s briefing at the House of Lords on 18 October, where Professor Sir Mike Richards, National Cancer Director at NCAT (1), stated that the diagnosis and treatment path for the rare cancers is now, “GP for referral – general/district hospital for diagnosis – specialists/specialist centre for treatment”. In AMMF’s experience this pathway is often not fol...
Read MoreViewpoint No 4 – Detecting Cholangiocarcinoma
Specialist Viewpoint – or cholangiocarcinoma as they see it … Article 4 – Detecting Cholangiocarcinoma AMMF is running a series of articles from specialists giving their viewpoint on cholangiocarcinoma diagnosis, treatments and research. The fourth article in this series falls into the research category. Earlier this year we were delighted and encouraged to hear that John Chetwood, a final ye...
Read MoreSpecialist Viewpoint No 3
Specialist Viewpoint - or cholangiocarcinoma as they see it … Article 3 - the Surgeon's Viewpoint AMMF is running a series of articles from specialists giving their viewpoint on cholangiocarcinoma diagnosis, treatments and research. The third article in this series, from surgeon Professor Brian Davidson has now arrived, and what he has to say is very much to the point. From commenting, "As surgery ...
Read MoreChris Allum’s Memorial Football Match
Chris Allum ran the London Marathon earlier this year for AMMF in memory of his father, Charlie Allum, who died from cholangiocarcinoma in June 2011. If you have read our marathon report, you will see that Chris has written very movingly of his experience of taking on this event, how he had a photo of himself and his Dad printed on the back of his running vest, and how he kept his Dad close to him throug...
Read MoreRadiofrequency Ablation Development
"Endoscopically applied radiofrequency ablation appears to be safe in the treatment of malignant biliary obstruction" Surgeons and engineers at Imperial College London have devised a new device which can deliver radiofrequency ablation (RFA) to cancers within the bile ducts of patients with advanced pancreatic cancer and cholangiocarcinoma. This isn’t a cure, but does keep the bile ducts open longer ...
Read MoreBiomarker update from Imperial College
In 2011, AMMF made a grant to Imperial College London to fund the work of Research Fellow, Dr Abigail Zabron, for a year. Abigail has now sent us an update on her work into cholangiocarcinoma biomarkers and on what is happening in the laboratory, and we are delighted to report that we have agreed a further grant to Imperial College to secure her second research year. “Over the past few months we have rec...
Read MoreAMMF & The London Marathon
AMMF is a Silver Bond holder with the Virgin London Marathon, which sounds good, but actually means we have just one guaranteed place every five years! So, each year we need runners who are successful in the ballot to come forward to run and fundraise for AMMF in one of the biggest and most important fundraising events of the year. In 2011, eight of our supporters entered the ballot, but only one was al...
Read MoreSharon and the Dorset Echo
Sharon Solomon is courageously using her personal experience of cholangiocarcinoma to raise awareness in the Dorset area, and to fundraise for AMMF to support research. A fundraising Golf Day, organised by Sharon and held at the Wessex Golf Centre in Weymouth on Saturday, 14th April, was covered by the Dorset Echo. An excellent awareness raising article duly appeared in the press, complete with a photo o...
Read MoreCC in the Daily Express
During February, which was AMMF's designated Cholangiocarcinoma Awareness Month, AMMF supporter Malcolm Robinson, who has undergone CC surgery and chemotherapy, and Dr Shahid Khan, Clinical Senior Lecturer & Consultant Physician at Imperial College London and advisor to AMMF, were both interviewed by Adrian Lee for the Daily Express "Your Health" section. Today, 17th April, that article appeared...
Read MoreFebruary’s FB Guest Posts
During February's Cholangiocarcinoma Awareness Month, we had a Guest Post of the Day on AMMF's Facebook page, and these posts provided some incredible stories of love, courage and support, of so many people lost to this ruthless disease, and of the appalling lack of knowledge there is of cholangiocarcinoma. We decided these posts shouldn't just disappear into cyberspace, so they have been gathered togeth...
Read MoreCup Cake CChallenge!
Despite being Practice Manager at a busy GP practice in Devon, Helen Tanner of Barnstaple had never heard of cholangiocarcinoma until she was diagnosed with it in 2010. Following her recovery from surgery, Helen has been a staunch supporter of AMMF and is doing all she can to raise awareness. Helen's staff at the practice have certainly taken up the cause with her. Their most recent fundraiser was a Cup ...
Read MoreMarcella’s CCampaign
Marcella Smith, who lost her husband Stewart to CC just last September, promised herself she would do all she could to raise the awareness of CC and to support AMMF. And she has certainly remained true to her word. Through her influence several fundraising activities have already taken place, and during February’s Awareness Month she was interviewed several times, appearing on BBC Radio Coventry & ...
Read MoreSizzling Sausages!
or The Cooked Breakfast CChallenge Report ... Laura Smith chose to support Awareness Month with a Cooked Breakfast CChallenge,raising funds for AMMF in memory of her uncle, Stewart Smith, who died from CC in September last year. On Friday, 24th February, Laura’s employer, GVA in Birmingham, funded the food and those taking part paid set prices for different breakfast items, full English, sausage sandw...
Read MoreSharon talks to Wessex FM
Sharon Solomon has courageously used her personal experience of cholangiocarcinoma to raise awareness in the Dorset area. In an interview with Wessex FM, Sharon described her own journey through her diagnosis of CC, her surgery, and now as she waits for the results of further tests. Many thanks go to Sharon for this massive boost to CC awareness and the work of AMMF. The interview was broadcast th...
Read MoreHelen says, “I’m lucky” …
Helen Tanner of Barnstaple, had never heard of cholangiocarcinoma until she was diagnosed with it in 2010. Initially, she didn't feel particularly ill; the only indication that something might be awry were a "couple of strange symptoms which didn't feel quite right." As we know, CC can be very difficult to detect and is often diagnosed too late for surgery, which is currently the only treatment availab...
Read MoreCC between Robbie and Mick …
Day 15 of Cholangiocarcinoma Awareness Month, and CC gets another radio airing - this time sandwiched between Robbie Williams and the Rolling Stones on BBC Essex! AMMF's Helen Morement was interviewed by Etholle George on the Dave Monk morning programme - another great chance to raise the awareness of CC, AMMF and its work, and to talk about the CChallenge. To hear the interview, click here, and g...
Read MoreNicola’s Tribute
During February, Cholangiocarcinoma Awareness Month, we have been having a Guest Post each day on AMMF's Facebook page. Today's was by Nicola Orthmani and she described it as, "A loving daughter's CC journey from right by her Father's side from beginning to a devastating end…" To read this very moving tribute to her father, Charlie Allum, and the description of the journey CC took them on, please cli...
Read MoreTransplantation – current thoughts
Dr Shahid Khan of Imperial College London, recently commented (Jan 2012) on the current situation re liver transplantation for CC : “Liver transplantation for CC has been performed but resulted in poor outcomes with early cancer recurrence and high death rates and so is not performed by most centres worldwide. However, transplantation may become an option again in the future, as we have seen data from ...
Read More10 mins on BBC Radio Leeds (nearly!)
On Monday, 6th February, Day 6 of Cholangiocarcinoma Awareness Month, CC got almost 10 minutes air time on BBC Radio Leeds! Malcolm Robinson and Helen Morement were interviewed by Wes Butters on his morning programme that promises to "get West Yorkshire talking". Malcolm described his personal experience of CC, and both were able to mention AMMF and its work. A great awareness raising opportunity - m...
Read MoreNew! Donate by text message
At AMMF we are doing all we can to raise awareness and to encourage and support research into cholangiocarcinoma. But we can’t do it without your help. There are several ways to donate – on line via AMMF’s Justgiving page, or by cheque, but now you can also donate by text message. Using JustTextGiving couldn’t be simpler. Your message must include the code AMMF 12 followed by the amount you...
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