CCF Volunteer Program

Volunteer Spotlight – Sarah Bennett

I’m 34 years old,  wife and mother to a 4 yr old. I was diagnosed July 2014, 3 weeks before my 31st birthday.  Had a resection August 2014. Did 6 months of chemo (gem/cis) from September 2014 to March 2015.

I was NED until February 2016. Had a reoccurrence in liver and watching lung nodules. March 2016, tried a phase 1 immunotherapy therapy which failed. I was allergic and had growth in the tumor in my liver plus a new tumor. I did gem/cis again from May 2016 to August 2016. Became allergic to that. Also, June I had a partial splenic embolization due to platelets. In September and October 2016, I under went a microwave ablation on each tumor.

I Was NED until February 2017. One of the tumors had active cells. Had my second liver resection March 2017. In August 2017, the remaining ablated tumor was active plus growth in lungs. In September 2017, started TAS 120 trial with Dr. Goyal at Mass General Hospital, which I continue to improve on.

I am very active with the cholangio community via Facebook and involved with the Foundation. I’m on the PCORI steering committee and started the Cholangio..what? blog in 2014 or 2015.

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.


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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