CCF Volunteer Program

Volunteer Spotlight – Carl Scheitrum

  • In the spring of 2013 Carl’s wife, Lynn, was diagnosed with Intrahepatic Cholangiocarcinoma. Their first question was, “WHAT?, “What is cholangiocarcinoma?” Neither had ever heard of it. Once Carl began to research the disease he quickly came across the Foundation. When Carl reached out for help he felt the staff and volunteers, within the Foundation, tried very hard to personalize each situation and helped to answer his many questions. Sadly, Lynn beat the odds, but could not win the battle and died in July 2014.
  • A few years later Carl reconnected with the Foundation, and the timing of this reconnection was nothing short of miraculous. CCF had recently agreed to a major database conversion and Carl was in a face-to-face meeting with CCF’s Executive Director, asking for help. Carl’s past corporate experience with large scale projects and systems made him the perfect fit and he knew he could help.
  • Carl worked closely with the Director of Development, Kathi Wagner, during that conversion and Carl continues to volunteer with other major IT projects involving Facebook Fundraisers and clinical trial databases, which make it easier for patients to view trials that are best suited for their diagnosis and treatment. Kathi writes, “Carl has donated countless hours to the Foundation, always going the extra mile and creatively initiating solutions to improve the efficiency and accuracy of our constituent management system. His volunteer efforts have made a profound difference in the way CCF does business, saving thousands of hours of manpower and increasing our capacity to improve services for all those affected by cholangiocarcinoma.”
  • While Stacie Lindsey, President and Founder, adds, “ Carl has been integral to helping the Foundation function smoothly and uphold its mission to support basic research, clinical research and advocacy. Carl has spent hundreds of hours behind the scenes moving programs and initiatives of the foundation forward in seamless ways. He has been delightful to work with and responds to every request. We simply would not have the ability on our own to do what Cal has made possible. We are so grateful that Carl volunteers and don’t know how we could ever thank him appropriately.”
  • It is a great honor and privilege to award Carl Scheitrum our Volunteer of the Month and we wholeheartedly thank him for all his efforts!

Recent Newsletters

New Opportunities

Thank you for your interest in volunteering with the Cholangiocarcinoma Foundation. We have a variety of different opportunities available at different times of the year.

icon-cholangioconnect CholangioConnect creates personalized connections that enable one-on-one support among cholangiocarcinoma fighters, survivors and caregivers. This peer-to-peer connection platform helps anyone touched by cholangiocarcinoma, at any stage in their journey, find a mentor to ask questions and get support from someone who has personal experience with the disease.

Learn More

You will work closely with Jordan, our volunteer coordinator in helping run the volunteer program. Duties will include: helping train and correspond to volunteer questions, help collect volunteer hours each month, help organize volunteer projects as assigned by Jordan.

Weekly Hour Requirement: 8-10

Positions to Fill: 1


You will work closely with Jordan (Social Media Manager) and Kathi (Director of Development). Duties will include: helping recognize and support people hosting social media fundraisers, continually looking for articles/events to recognize on Foundations social media, ways to improve our program and increase our reach and other projects as assigned.

Weekly Hour Requirement: 5

Positions to Fill: 2


You will work closely with Kathi (Director of Development) with data entry projects. Kathi manages the Foundations  database and there are always a variety of projects that we need help with. Familiarity with Excel and database management a plus.

Weekly Hour Requirement: 10

Positions to Fill: 2



Text about the resources below.

Jordan Giles is the Foundation’s Volunteer Coordinator. Jordan has been a volunteer himself with the Foundation for many years and was hired on as a full-time staff member in November 2017. Jordan graduated with his Master’s in Public Administration from the University of Utah. If you have any question regarding the Foundation’s volunteer program, please contact Jordan at Jordan.Giles@cholangiocarcinoma.org  
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