Medical Research

CHOLANGIOCARCINOMA FOUNDATION

aka CCF   |   Herriman, UT   |  www.cholangiocarcinoma.org

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 info

2007

Executive Director

Ms. Donna Mayer

President

Mrs. Stacie Lindsey

Main address

5526 West 13400 South #510

Herriman, UT 84096 USA

Show more addresses

EIN

20-5776861

Cause area (NTEE code) info

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

SOURCE: Self-reported by organization

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

SOURCE: Self-reported by organization

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.

Population(s) Served
People with cancer

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/

Population(s) Served
People with cancer

Free online book available upon request.

Population(s) Served
People with cancer

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.

Population(s) Served
People with cancer

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.

Population(s) Served
People with cancer

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/

Population(s) Served
People with cancer

Nearly 60 webinars and educational sessions have been hosted live and posted for enduring viewing on YouTube and Vimeo.

Population(s) Served
People with cancer

An educational tri-fold brochure about cholangiocarcinoma is available in English, Spanish, Japanese and Chinese.

Population(s) Served
People with cancer

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.

Population(s) Served
People with cancer

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/

Population(s) Served
People with cancer

Where we work

Our results

SOURCE: Self-reported by organization

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
Population(s) Served

People with cancer,People with diseases and illnesses

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
Population(s) Served

People with cancer,People with diseases and illnesses

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
Population(s) Served

People with cancer,People with diseases and illnesses

Related Program

Annual International Conference

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Conference Attendees

Charting impact

SOURCE: Self-reported by organization

Five powerful questions that require reflection about what really matters - results.

What is the organization aiming to accomplish?

1) Fund Academic Research Fellowships; <br/>2) Support the efforts of the International Cholangiocarcinoma Research Network;<br/>3) Increase attendance at our annual conference for patients and medical professionals;<br/>4) Enhance volunteer training to support patient and caregiver education programs.

1) Annual Call for Applications and subsequent review by medical advisors;<br/>2) Recruiting international members through networking, initiating clinical trials in collaboration with biotech and pharmaceutical industry to accelerate treatment options;<br/>3) Build mailing lists to market event; promote via email, website and social media; press releases; <br/>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.

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.

Via our board- approved Strategic Plan and Fundraising Plan, the Cholangiocarcinoma Foundation has established a number of measurable action steps for each of the above mentioned goals which will help us stay the course and achieve our established targets. By reaching various benchmarks, we will be able to define the levels of our progress.

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

CHOLANGIOCARCINOMA FOUNDATION
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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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  • Analyze a variety of pre-calculated financial metrics
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CHOLANGIOCARCINOMA FOUNDATION

Board of directors
as of 9/8/2020
SOURCE: Self-reported by organization
Board chair

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

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • 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

Keywords

cholangiocarcinoma, bile duct, cancer, medical, research, advocacy, patients