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CCF Volunteer Program

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June's Volunteer Spotlight - Dave & Linda Fleischer

Dave and Linda Fleischer might be retired, but there is no slowing down in sight. These grandparents enjoy family time, rock painting, and travel, particularly road tripping. Dave and Linda are bereaved caregivers. They lost their daughter, Sarah Bennett, to cholangiocarcinoma at the age of 35. She passed away four years after her diagnosis in September of 2018. Sarah was an incredibly brave wife, mother, and friend to many in this community as she served as a passionate advocate who endured two liver resections, chemotherapy, a partial splenectomy, and three clinical trials. Sarah's active role as a volunteer fostered unimaginable community connections. Dave and Linda were supportive parents and advocates, even attending the Annual Conference twice during Sarah's treatments.

In early 2015 Sarah began a private Facebook group for cholangiocarcinoma patients - a safe place for patients to connect and share experiences. Linda eventually realized that caregivers needed a space to share their voice and make connections too. Nearly three months following the creation of the patient group, Linda founded the caregiver Facebook group, which is still used today with over 1,500 followers.

To say Sarah's loss was difficult does not adequately explain the heartache. Taking time to grieve Sarah's loss was absolutely necessary and beneficial. After Dave retired, he had the feeling that perhaps it was his time to pick up the torch from Sarah and Linda and carry it forward. Dave made plans to serve as a conference volunteer in 2020, but that was postponed due to COVID restrictions. But after an invitation to participate on the volunteer anniversary steering committee, Dave brought lots of enthusiasm and ideas to the committee to commemorate the 15th anniversary of CCF. The idea of the Journey of Hope was born. Dave and Linda have worked tirelessly to plan and execute a six-week 15,000-mile road trip, traveling to all 48 contiguous states, working to spread awareness, express gratitude, and fundraise for cholangiocarcinoma research. Dave and Linda want to inspire hope as they travel to 15 towns named Hope, visit patients, caregivers, providers, researchers, and industry partners.

Only days before their scheduled start to the trip, they watched a past video of Sarah's volunteer work critical to the Mutations Matter initiative, which they had never before seen. In the video, Sarah speaks of how she wanted to share the voice of her journey to instill hope for others with cholangiocarcinoma. The particular words Sarah used, "journey" and "hope," now resonated with them in an exceptionally poignant way. Unbeknownst to her parents, years prior, Sarah had begun their Journey of Hope, and now together, Dave and Linda have picked up the torch and continue moving it ahead. "Sarah would be thrilled," shares Linda. This is a remarkable volunteer undertaking and a historic event. It is a great honor and privilege to recognize Dave and Linda Fleischer as Volunteers of the Month.

New Volunteer Opportunities

Cindy Thomas is the Foundation's Volunteer Coordinator.

Cindy received a Bachelor of Science degree from Brigham Young University and has enjoyed working with the Foundation since June of 2018 as a part time staff member.

If you have any questions regarding the Foundation's volunteer programs, please contact Cindy at cindy.thomas@cholangiocarcinoma.org.

cindy