March Community Member Spotlight


on Kathy

Kathy was diagnosed with cholangiocarcinoma in November 2021. Like many diagnosed at later stages (3B) with portal vein involvement, her cancer was deemed inoperable. Initially, she was given a poor prognosis. Throughout 2022, she underwent treatment, and she is thankful to share that her disease has remained stable with no progression since completing treatment.

Early in her diagnosis, one of Kathy’s daughters discovered the Foundation. She encouraged her mother, saying, “There are a lot of stories and information, and there’s more hope than we were presented with initially.” After some time, Kathy requested a mentor. “It was positive to connect with someone who truly understood some of what I was fearful about. Someone with fears and anxieties but could offer me real support and encouragement.”

After treatment, Kathy carefully considered becoming a mentor herself. She shared, “For some time now, my cancer has been stable, and I’ve been feeling really good. I didn’t want to waste this valuable time. I realized I was ready to open myself up more, get outside my head, and be there for others whose lives, like mine, have changed with this diagnosis. I aim to be a voice of understanding, encouragement, and empathy to others going through this difficult diagnosis. My mentor has helped me a great deal, and I see this as a chance to ‘pay it forward.’”

Kathy is retired and full of interests. Her first love is spending time with her daughters and grandchildren, and she tenderly shared, “I enjoy getting to know my grandkids as people as they get older.” Musical her whole life, Kathy has learned to play the ukulele. The ukulele is a communal instrument, and across the world, there are local groups called Song Circles that join together to play. “Music is so valuable to sustain oneself during difficult times. Not only the music but the people have been so supportive and positive.” Kathy’s combined joy for life and heart for others make her an inspiring figure in our community. The Foundation is grateful that Kathy shares her vibrant take on life with others facing CCA.

Research Advocacy
Why you should become a research advocate?
Why is advocacy work important?
What do you do as a research advocate?
What you enjoy about being a research advocate?

Are you passionate about the difference an empathetic and supportive person can make in a patient or caregiver’s journey? Become a mentor and offer encouragement and compassion to patients and caregivers as they walk through difficult periods of diagnosis, treatment, and, if needed, palliative care. Mentors are cholangiocarcinoma survivors, patients, caregivers, family members, or friends of cholangiocarcinoma patients.

Learn more about our CholangioConnect Program

Would you like to help fuel our mission by raising funds for research, advocacy, and patient support while also increasing awareness? You can help raise critical funds in many ways–from hosting an online birthday fundraiser, to planning a workplace raffle, or coordinating a fundraising event with your friends and family or in your community–these opportunities are flexible and are inspired by YOU to fit your interests and time constraints. CCF has tools and resources to help guide your success.

Do you enjoy participating in athletic events? Partner your love for fitness with your desire to make an impact by joining TeamCCF today! When you participate in an organized race, marathon, or other athletic event as a TeamCCF member, you create change by raising funds and awareness.

Would you like to help link patients to scientific research to promote education and create change? As a Research Advocate, you will have the opportunity to provide a patient perspective on research activities to scientific advisory boards and committees. Research Advocates stay current on available research and clinical trials, complete ongoing required training, and attend meetings.

Do you enjoy engaging with others through social media? If you are active on at least one social media platform, you can help us expand our reach. As a Social Media Influencer, you will work to recognize and support people hosting social media fundraisers, spread awareness of the Foundation’s mission, and research and develop social media campaigns.

Are you a detail-oriented person who enjoys providing support for important projects? Administrative Assistants provide vital contributions to CCF initiatives by completing various administrative tasks. We will pair your knowledge and skills with the right project.

If you have any questions regarding the volunteer program, please contact Claire Condrey, Volunteer Manager, at

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