CHOLANGIOCARCINOMA FOUNDATION
Mission
Our mission is to find a cure and improve the quality of life for those affected by cholangiocarcinoma (bile duct cancer).
Founded in 2006, the Cholangiocarcinoma Foundation provides education and collaborative opportunities for patients, caregivers, doctors, researchers, industry, and other partners invested in bile duct cancer. We provide services throughout the United States and internationally. In addition to funding research, services include an annual three-day conference, complimentary publications in four languages (English, Spanish, Japanese and Chinese), a free online book "100 Questions and Answers About Biliary Cancer", an informational website, a patient registry, phone/email support and a robust discussion board.
Ruling year
2007
Executive Director
Ms. Donna Mayer
President
Mrs. Stacie Lindsey
Main address
5526 West 13400 South #510
Herriman, UT 84096 USA
EIN
20-5776861
NTEE code
Cancer Research (H30)
Alliance/Advocacy Organizations (G01)
Cancer (G30)
IRS filing requirement
This organization is required to file an IRS Form 990 or 990-EZ.
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Communication
Programs and results
What we aim to solve
Cholangiocarcinoma is a rare, aggressive and deadly form of cancer that originates from the cells lining the bile duct and affects approximately 10,000 Americans annually. Almost 2 out of 3 people with bile duct cancer are 65 or older when it is found. However, people of any age can be diagnosed, and the incidence and mortality of cholangiocarcinoma in North America and Europe has increased dramatically in the past three decades, but it is not known why. Risk factors may include exposure to chemicals such as asbestos, a history of smoking, infections or inflammation from conditions such as hepatitis or ulcerative colitis. However, many cases also occur spontaneously and relatively little is known about the possibility of genetic inheritance in this type of cancer.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
International Cholangiocarcinoma Patient Registry
The International Cholangiocarcinoma Patient Registry represents a collaborative effort and opportunity, for The Cholangiocarcinoma Foundation, to connect with our larger global patient community to further knowledge of cholangiocarcinoma (bile duct cancer).
The Mission of the International Cholangiocarcinoma Patient 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.
The Vision of the International Cholangiocarcinoma Patient Registry is to collect bile duct cancer patient information about the incidence and prevalence of cholangiocarcinoma and related disorders. The International Cholangiocarcinoma Patient Registry will also assist in the screening of appropriate participants for research studies and clinical trials.
Research Grants
CCF has awarded research grants totaling $1.25 million in the past five years. These funds are helping researchers at institutions across the globe collaborate and discover more about the mechanisms behind cholangiocarcinoma. We are excited about the progress being made in this area and look forward to better outcomes for our patients. Learn more about each grant and scientist at: https://cholangiocarcinoma.org/professionals/research-fellowship-program/
100 Questions and Answers about Biliary Cancer
Free online book available upon request.
Website and Social Media
The Cholangiocarcinoma Foundation's website receives approximately 250,000 hits annually from visitors across the globe. Our Facebook page has over 9,100 followers and we have over 1,000 followers on Twitter and Instagram.
Discussion Boards for Patients and Caregivers
Nearly 100,000 messages on 13,461 different topics have been posted on our website discussion board since our founding. Topics include What's Working, Chemotherapy, Radiation, Surgery, Pain Management, Alternative Treatments, Insurance, Hospitals, Clinical Trials, Palliative Care, Grief Management, and other areas of interest.
Annual International Conference
The 6th Annual Cholangiocarcinoma Foundation Conference was held Jan. 30 - Feb. 1, 2019 in Salt Lake City, UT and attended by 480 patients, researchers and physicians from 40 states and 18 countries.
Over 300 researchers and physicians attended the 3rd Annual Asia-Pacific Cholangiocarcinoma Conference in Taipei, Taiwan, March 15-16, 2019.Learn more at: http://www.apcca2019.com/
Webinars and Educational Videos
Nearly 60 webinars and educational sessions have been hosted live and posted for enduring viewing on YouTube and Vimeo.
Tri-Fold Publication Available in Four Languages
An educational tri-fold brochure about cholangiocarcinoma is available in English, Spanish, Japanese and Chinese.
International Cholangiocarcinoma Research Network (ICRN)
The ICRN is a global collaboration of research groups from renowned institutions that are working in concert to improve knowledge about cholangiocarcinoma etiology, prevention, early detection, treatment and prognosis. The network is comprised of highly talented individuals from a spectrum of disciplines, perspectives, and research methods who share the passion to make significant scientific advances that improve outcomes for patients with cholangiocarcinoma.
Educational Initiative / Mutations Matter
CCF has launched a new global education initiative for patients and healthcare professionals to learn about the importance of molecular profiling and clinical trials that may improve treatment options and provide hope for improved outcomes. Learn more at: https://cholangiocarcinoma.org/mutationsmatter/
Where we work
External reviews
Photos
Videos
Our results
How does this organization measure their results? It's a hard question but an important one.
Number of unique website visitors
This metric is no longer tracked.Totals By Year
Related Program
Website and Social Media
Type of Metric
Input - describing resources we use
Direction of Success
Increasing
Context Notes
Website hits
Number of research studies conducted
This metric is no longer tracked.Totals By Year
Related Program
Research Grants
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
For more information, please visit: https://cholangiocarcinoma.org/professionals/our-grants/
Number of participants attending course/session/workshop
This metric is no longer tracked.Totals By Year
Related Program
Annual International Conference
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
Conference Attendees
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
1) Fund Academic Research Fellowships;
2) Support the efforts of the International Cholangiocarcinoma Research Network;
3) Increase attendance at our annual conference for patients and medical professionals;
4) Enhance volunteer training to support patient and caregiver education programs.
What are the organization's key strategies for making this happen?
1) Annual Call for Applications and subsequent review by medical advisors;
2) Recruiting international members through networking, initiating clinical trials in collaboration with biotech and pharmaceutical industry to accelerate treatment options;
3) Build mailing lists to market event; promote via email, website and social media; press releases;
4) Launch CARE (Cholangiocarcinoma Advocacy Research Education) initiative to train volunteers to serve as discussion board moderators, speaker's bureau presenters, CholangioConnect mentors, and public policy advocates.
What are the organization's capabilities for doing this?
As we enter our next decade of service, the Cholangiocarcinoma Foundation is well-equipped to manage this growth. Our budget has increased from $561,000 in 2014 to over $1M in 2017. Increasing partnerships with industry, collaborations with like-minded non-profits and healthcare organizations, and the generous continuing support of many individual long-term and major donors have provided us with the resources necessary to expand our efforts and further serve those with bile duct cancer.
What have they accomplished so far and what's next?
After 12 years, we remain the only non-profit organization in North America exclusively dedicated to finding a cure and supporting patients and caregivers affected by cholangiocarcinoma. This in itself is an achievement, however there is significant work yet to be accomplished. We will continue to expand the depth and breadth of the patient and caregiver outreach we offer, the volume of individuals we reach and serve, and number of research projects we can fund. As long as cholangiocarcinoma still exists, our job is not yet complete.
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
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Connect with nonprofit leaders
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CHOLANGIOCARCINOMA FOUNDATION
Board of directorsas of 9/8/2020
Mrs. Stacie Lindsey
President, Cholangiocarcinoma Foundation
Jason Scott
Founder, JS Consulting
Bruce Coppock
Retired, St. Paul Chamber Orchestra
Dan Blum
Managing Member, Glenhaven Capital
Barbara Dupont
Teacher, West Running Brook Middle School
Ross Green
Investment Professional, NY Based Asset Manager
Patrica Maxin
Program Manager, Cholangio Connect
Sara Hinkley
Product Group Intellectual Property Counsel, M-I SWACO, a Schlumberger Company
Board leadership practices
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Board orientation and education
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes
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