The Cholangiocarcinoma Foundation’s Blog has been home to a variety of content ranging from patient perspectives to updates on medical advancements.  Contributors like patients Sarah Bennett and Cait Telaak share news and personal anecdotes, and the blog also serves as a resource for new patients to familiarize themselves with the Foundation.  Keep an eye out for new posts as together we explore the world of Cholangiocarcinoma and the tireless work towards a cure!

C.A.R.E. Team Launches in Chicago

Melinda Bachini is a familiar face within the Foundation.  An 8-year survivor, she is on the front line of introducing the newly diagnosed to the Foundation’s services and helping them to navigate their new reality.  In addition to her work with the Foundation, Melinda sits on several national committees such as the NCI Patient Advocate Steering Committee.  When Marion Schwartz retired as the Chief Advocacy Officer over the summer after over 10 years of service, Stacie Lindsey recognized Melinda’s talents and asked her to fill the void of Marion’s absence. With a mountain of work to be done and limited resources, Melinda quickly began to brainstorm ways to mobilize the existing volunteer population.  She presented the kernel of an idea to Stacie at the... read more

Team CCF Takes on the Chicago Marathon

Assuming you haven’t tackled one before, have you ever really thought about what it takes to run a marathon?  If a runner maintains a 12-minute mile pace (essentially a jog) and does not take walk breaks, it would take them 5 hours and 14 minutes to complete the 26.2-mile course.  For some perspective, if you’ve ever watched the BBC’s 6-part mini-series of Pride and Prejudice, take the time you sit on the couch watching each episode back to back and imagine that instead of falling in love with Colin Firth’s Mr. Darcy, you’re running.  Without stopping.  For 26.2 miles. Is anyone else insanely impressed by that?  I know I am, and on this past Sunday, we had 8 runners for Team CCF do just... read more

Event in memory of Kathy Plouff

Event in memory of Kathy Plouff I am so happy to update you to tell you the Fundraiser we had in memory of my Mom on what would have been her 52nd birthday was a HUGE success,I believe that we raised a little over $2,000!   We are so grateful for our generous friends and family that came out to support the foundation, which means so much to my sister, father, and I. I have attached some pictures from the event!   We are again so thankful and blessed to be able to contribute to the foundation. It was a beautiful tribute to our mother and hopefully shined a light on the value of the CCF! Thanks!   Best,  Alie... read more

ERCP or PTC Survey – We Need Your Help

CCF is partnering with the Medical University of South Carolina and leading medical institutions to conduct a study of whether ERCP or PTC should be used as the first procedure for eliminating jaundice for patients with cholangiocarcinoma, while also taking into account patient attitudes, values and expectations. Endoscopic Retrograde CholangioPancreatography (ERCP) – uses a flexible scope passed through the mouth to the bile duct Percutaneous Transhepatic Cholangiography (PTC) – places a catheter through the skin into the bile duct Both procedures have been widely used for many years for relieving jaundice and its related symptoms, but few studies have compared their merits and disadvantages. This research has the potential to not only measure the effectiveness of the procedures, but to also ensure that all stakeholders can be fully informed about the critical choice between having... read more

Sneak Peek at the New Discussion Boards – the Foundation’s Hidden Gem

The Foundation’s discussion boards have long been a gathering place for patients and caregivers to share information and offer support.  When it was first created ten years ago, the discussion board corner of the cholangiocarcinoma.org site was on par with other similar forums, but as ten years passed and technology advanced, the decision was made to give the boards a face-lift.  Spearheaded by the Foundation’s very own Rick Pollock, the new site is sleek, mobile-friendly, and packed full of features for users to enjoy. Before we jump in to some of the excellent changes, it might be a fun exercise to take a look back at the boards through the years and learn a little about the recent path to improvement.  As of this writing,... read more

My Name’s Cait and I’m Here to Blog

Hello Cholangiocarcinoma Family!  I write to bid you welcome to the blog and to provide a brief introduction.  After some time under the watchful eye of multiple volunteers and leaders from the Foundation, the blog is returning to a single owner model.  This isn’t to say you won’t hear from a variety of voices, but the hope is to bring you consistent content every other week in a familiar format.  For this my inaugural post, I wanted to share some thoughts on how you will see things organized in the future and give a little personal history. The evening of November 24th, 2015, after only a little over 24 hours of knowing ‘something’ was wrong, I was diagnosed with intrahepatic cholangiocarcinoma.  I was 28... read more

Knock Out Cancer Event

Hi! Just getting back to you about our first fundraising event that was held on July 22- Knock Out Cancer. We had a great turnout with 100+ people, raising over $5,000! We created t-shirts and cups for this event that were able to be purchased, along with about 35 donated baskets that we raffled off. In the end, we have raised a total of $5,850 from this event and we will be donating it in full to The Cholangiocarcinoma Foundation! Although this was just the first year, we have even bigger goals for the next few years to come. This foundation hits very close to home with us so we are more than supportive of everything that you all do! I am going to... read more

Step inside the World’s Newest Cholangiocarcinoma Research Lab – Saha Laboratory

Step inside the World’s Newest Cholangiocarcinoma Research Lab – Saha Laboratory Principal Investigator: Supriya K Saha, MD, PhD Assistant Member, Fred Hutchinson Cancer Research Center Human Biology & Clinical Research Divisions Assistant Professor, University of Washington Medical Center Department of Medicine, Division of Oncology Location: Fred Hutchinson Cancer Research Center, Seattle, Washington Website: https://research.fhcrc.org/saha/en.html Established: 2016 Researchers: 2 postdoctoral fellows, 1 laboratory manager Goal: Our laboratory seeks to identify and characterize new treatment strategies for cholangiocarcinoma, and to translate our laboratory findings into innovative clinic trials that improve the lives of our patients. Dr. Saha’s work on cholangiocarcinoma has been recognized by the National Institutes of Health (NIH) and published in major scientific journals, including Nature. He was also the recipient of a $60,000... read more

Meet Professor Juan W. Valle’s Research Team

Meet Professor Juan W. Valle's Research Team Principal Investigator: Juan W Valle Professor in Medical Oncology; Institute of Cancer Sciences, University of Manchester, Manchester Academic Health Sciences Centre (MAHSC), Manchester. Consultant in Department of Medical Oncology, The Christie NHS Foundation Trust, Wilmslow Road, Manchester. Location: The Christie NHS Foundation Trust (Manchester, United Kingdom) Website: http://www.christie.nhs.uk/ Established: 2000 Researchers: 4 Senior Staff in medical oncology; 2 PhD students; 2 research fellows; 4 research nurses, 1 nurse clinician, 1 clinical nurse specialist, a team of clinical trial coordinators, a project manager, a dietitian and various students Goal: Professor Valle’s team is focused on clinical and translational research in cholangiocarcinoma and other Hepato-Pancreato-Biliary tumours. They aim to understand clinical characteristics of patients with cholangiocarcinoma and develop new... read more

Step inside The Kwong Lab

Step inside The Kwong Lab Principal Investigator: Lawrence Kwong, PhD, Assistant Professor of Translational Molecular Pathology Location: University of Texas MD Anderson Cancer Center Website: https://www.mdanderson.org/research/departments-labs-institutes/labs/kwong-laboratory.html Established: 2015 Researchers: 4 postdoctoral fellows, technicians, and students; 2 visiting students Message to Patients Dr. Kwong would like to stress that patients are the number one focus at MD Anderson. Therefore, as a researcher, it is vitally important that our laboratory maintain human contact with patients through communications, attending conferences where patients and survivors are present, and keeping in close contact with doctors who specialize in cholangiocarcinoma. Goal: The laboratory is establishing new cholangiocarcinoma mouse models and cell lines to test drug combinations and understand how DNA is affected by this cancer. Greatest Achievement: Dr. Kwong considers... read more

Take a step into the Bardeesy Lab

Location Massachusetts General Hospital (MGH) Website http://www.bardeesylab.com Established 2005 Principal Investigator Nabeel Bardeesy, PhD Associate Professor of Medicine at Harvard Medical School Faculty at the MGH Center for Cancer Research Affiliated Faculty at the MGH Center for Regenerative Medicine Researchers 12 postdoctoral fellows, technicians, and students Studies The laboratory has worked to develop experimental models to better understand cholangiocarcinoma and predict potential new treatment approaches Message to Patients As a CCF Scientific Advisory Board Member and cholangiocarcinoma researcher, Dr. Bardeesy would like to convey the message to patients that there is a rapidly growing community of scientists who are focusing on this cancer. Significant advances have been made in identifying and understanding the mutations that cause this cancer. This information has led to clinical... read more
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