The Cholangiocarcinoma Foundation and You

We have come a long way. What began as a volunteer driven, grassroot organization has evolved in to a full fledged organization solely focused on easing the lives of those touched by this cancer all the while making your donations work in the most efficient and effective way. This cancer does not discriminate; no matter where in the world, rich or poor, young or old, wealthy or not it can affect everyone; appear without warning and forever change our life.
Much is going on behind the scene. The below summary furthers everyone’s understanding of the foundation, the achievements and the work ahead of us.

This is for you:

Our mission is to find a cure and improve the quality of life for those affected by cholangiocarcinoma (bile duct cancer).
Results: During 2015-16 we launched our first Research Fellowship Program. This year we were able to provide five research fellowship awards ranging from $40,000-$60,000, twice what we were able to fund in research the prior year. This year’s awards included three named fellowships in memory of courageous individuals whose lives were cut too short by this devastating disease, and one grant in collaboration with the Conquer Cancer Foundation of the American Society of Clinical Oncology. In future years we hope to partner with additional professional associations and charitable foundations to expand our research funding. Over the past four years, we also have provided over $115,000 to the International Hepatobiliary Neoplasia Biorepository (IHNB) to develop a resource bank of clinical information and biospecimens from persons having or at risk for hepatobiliary cancers, including family members of patients. The IHNB’s goal is to create a unique resource to enable future biomarker discovery and validation studies; to partner with researchers from other institutions by sharing biospecimens and data for collaborative research efforts which are critical to advancing the field of cholangiocarcinoma; and to actively enroll fifteen centers into the study by the end of 2015. Over the past three years we have provided $190,000 to the Genome Wide Association Studies (GWAS) project. The GWAS is an approach that involves rapidly scanning markers across the complete sets of DNA, or genomes, of many people to find genetic variations associated with a particular disease. Once new genetic associations are identified, researchers can use the information to develop better strategies to detect, treat and prevent the disease. Such studies are particularly useful in finding genetic variations that contribute to common, complex diseases, such as asthma, cancer, diabetes, heart disease and mental illnesses, as well as cholangiocarcinoma. In 2014, we established the International Cholangiocarcinoma Patient Registry (ICPR). The mission of the ICPR is to collect patient information about the incidence and prevalence of cholangiocarcinoma and related disorders. To date, over 450 patients or family members have completed registry profiles. The ICPR will also assist in the screening of appropriate participants for research studies and clinical trials. Ultimately, the goal of the Registry is to assist, accelerate and support research of bile duct cancer into earlier and more comprehensive diagnosis; life-extending therapies and treatments; new and repurposed drug trials; protocols and medications addressing debilitating treatment side-effects; possible end stage complications; and ultimately efforts leading to a cure. It is the only registry of patient health information solely related to cholangiocarcinoma in the world. It provides an unprecedented resource of data about family history, risk factors and more to the medical and scientific communities, and patients as well.
Target demographics: Individuals with bile duct cancer and their families.
Direct beneficiaries per year: Approximately 5,000 people are diagnosed with bile duct cancer in the US each year.
Geographic areas served: Based in Salt Lake City, UT, we are the only US nonprofit organization dedicated to funding research and supportive patient and family services for individuals diagnosed with bile duct cancer.
Programs: During 2015, we will fund over $300,000 in research. We also will be hosting our 3rd Annual Conference in 2016. Additionally, we provide a variety of patient services. One such resource is a 136-page book titled “100 Questions and Answers About Biliary Cancer” which is offered free upon request in both digital and printed formats. Our informational tri-fold brochure “Cholangiocarcinoma” is published in four languages, English, Chinese, Japanese and Spanish. We also have a double-sided page fact-sheet in English that can be used as a poster. Our twice-yearly newsletter is distributed to over 8,000 email subscribers. We have developed a Biliary Emergency Information Card to address an emergent need to facilitate physician-to-physician communication, assuring prompt and definitive medical treatment in a biliary emergency. Instructions on the card include specific emergency treatment guidelines and a Quick Response (QR) code that medical personnel can scan for additional information and resources. Patients and caregivers can easily download and print the card from the CCF website (http://cholangiocarcinoma.org/biliary-emergency-information-card/) and carry it in their wallets to give to health care providers. This card educates patients on symptoms of a biliary emergency and empowers them to be an active participant in their own care. Patients and family members are encouraged to call our phone number to speak with our President, Executive Director, or Chief Advocacy Officer who are all available to personally answer questions regarding current treatment options, clinical trials, leading medical institutions/teaching hospitals treating cholangiocarcinoma, and more, as well as to lend and ear and provide emotional support during this difficult time. During 2014, our website received nearly 230,000 hits (4,500 per week) from 112,000 unique users. Users stayed on the page for an average of 4 minutes and 43 seconds, looking at an average of over five pages per visit. Our website provides a wide variety of services to patients and family members including a patient-authored blog, a robust internet discussion board (with over 91,000 posts, 3,400 registered users, and over 13,000 topics of interest), e-publications, and other resources to help patients, families and medical professionals learn about diagnosis, current treatments and the latest research as well as links to organizations offering financial assistance to individuals. The website also connects users to our social media pages including Facebook (8,300 likes), Twitter (700 followers), as well as Instagram, Linkedin, Vimeo and YouTube. We have 25 webinars posted on our video sharing sites.