Each month, we recognize those whose contributions inspire us and who demonstrate excellence with their service to others. We thank those outstanding individuals and honor their immense efforts, time, and resources that are generously given to the Foundation.
Shauna Fuller
Shauna volunteers in memory of her father, Jim Lynn.
Shauna is grateful for the many people who came out to support her.
Shauna with her mother, Linda.
Shauna with her husband, Dylan.
Shauna Fuller is a clinical psychologist at the Milwaukee VA Medical Center. She and her husband, Dylan, have two boys. Their eldest son, Ethan, is a sophomore at Marquette University. Their younger son, Clayton, attends a boarding school in Lake Placid, which allows him to pursue his passion for skiing. Shauna has a deep love for her family, enjoys her meaningful career, and is passionate about fitness.

In 2017, Shauna came across an article at her workplace that caught her attention. It shared the increased risk Vietnam veterans have of developing cholangiocarcinoma. Shauna wanted to be certain her father, Jim Lynn, a Vietnam veteran, read the article. So, instead of mailing it to him, she decided to hand-deliver it when he and Shauna’s mom, Linda Lynn, came for a weeklong visit. Just two days after Shauna’s parents returned to their home, Jim became jaundiced. Shortly after his hospitalization, Jim was diagnosed with cholangiocarcinoma. About a year and a half after diagnosis, on the day of Shauna’s parents’ 50th anniversary, Jim passed away. Shauna said she felt her dad really wanted to make it to his anniversary. Shauna said that her dad taught her how to die with dignity. He was full of kindness and humor throughout his entire journey, she said.

Shauna connected with the Foundation shortly after her father’s diagnosis. She remembers searching the internet and being utterly terrified by the grim results. Finding the link to Foundation’s website amongst that dispair was incredibly important. She found support and helpful information, including how to navigate the healthcare system as a veteran. She was grateful to have the Foundation as a resource at a time when she felt scared and uninformed. After her father’s passing, Shauna reached out to the Foundation to learn how she could help raise funds for the organization. She combined her passion for fitness with her desire to give back and signed up to run in the Chicago marathon for TeamCCF. She began her fundraising and training but then developed a foot injury. Then, the marathon was canceled due to COVID-19. Instead of seeing the canceled marathon and the difficulty with her foot as a reason to stop, Shauna saw it as a reason to not delay and keep going. She knew that if her dad had faced the same situation, nothing would have kept him from moving forward. Shauna decided to continue her training and run alone.

Her Saturday morning training runs were quite long. She found precious moments on those runs. She spent time thinking of her father and working through her grief. Shauna’s husband, Dylan, joined her for stretches by slowly biking next to her to offer support. Shauna also experienced great community support during her training. Her “workout buddies” helped her plan the logistics for her route including where to take water breaks and bathroom breaks. (Dylan also quietly planned where to have cheerleaders along the route.) Members of the CCF community reached out to Shauna to encourage her and congratulate her on continuing her training. On the day of the marathon, many friends of Shauna and her father’s came out to support her along her path. During the race, Shauna proudly wore her father’s chain from Vietnam and his hat from treatment that reads “Cancer Picked the Wrong JarHead..” She felt her father’s presence with her during the entire journey, she said. Shauna shared that volunteering gave her the opportunity to say “thank you” to the Foundation and gave her a way to stay connected with her dad and talk about his story. She appreciates being part of a community that understands the pain and devastation that can be associated with cholangiocarcinoma and the sense of belonging and support offered by the Foundation.

Shauna was asked what her advice would be if someone read her story and was inspired to get involved. She replied, “I would say just do it. Take the inspiration and run with it. Don’t question it, just do it!” Thank you, Shauna, for sharing your father’s story with us and providing us with inspiration!
Thank you for making an impact during Cholangiocarcinoma Awareness Month! Some of the many significant accomplishments include:
  • SOLD OUT! 150 free lightbulbs and yard signs thanks to Taiho Oncology
  • $90,134 was raised from 979 donors
  • 16 official proclamations declared Feb. 12th as World CCA Day
  • 1 bill sponsored by Ohio Rep. Cindy Abrams to recognize Feb. 12th as Cholangiocarcinoma Awareness Day.
  • 65,010 website page views
  • More than 150 homes were lit up in green around the world
Cindy Thomas
CholangioConnect Coordinator
Claire Condrey
Volunteer Coordinator
Dear Volunteers, 

I am pleased to announce that Cindy Thomas has accepted the position of CholangioConnect Coordinator. Cindy has fulfilled the role of part-time volunteer coordinator for the past three years and has built CCF’s volunteer program from the ground up. We want to thank Cindy for her tireless work. CCF’s volunteer program would not be where it is today without her innovative ideas. One of her areas of focus during this time was CholangioConnect, and with this transition, she will be exclusively supporting this growing and essential program. 

It is my pleasure to introduce you to CCF’s new full-time Volunteer Coordinator, Claire Condrey. Claire comes to us with more than 10 years of experience working with volunteers. Before accepting this position, Claire worked as a youth ministry coordinator for the Central Texas Conference. She brings experience and a proven track record of success in working with volunteers, which will be invaluable as she steps into the role of volunteer coordinator. 

Please join us in congratulating Cindy and Claire on their new positions. 
Alli Ward
VP & Chief Operating Officer
April Schedule for
Patient Support Groups,
Caregiver Support Groups,
and Educational Webinars
2:00 p.m. MST, on Thursdays

April 28 - QED

Registration is free but required. Visit the CCF calendar to see all the additional April events and links to get involved.
Note: This is a great resource for CholangioConnect Mentors to share with either newly diagnosed patients or any new mentees.
Dr. Reham Abdel-Wahab
Director of Research and Chief Scientific Officer

Recently, a group of medical oncologists assessed the
long-term outcome of a randomized phase III BILCAP trial to evaluate the impact of Capecitabine (Xeloda) as adjuvant therapy for surgically resected biliary tract cancers. 
  • Between 2006 and 2014, 447 patients with resectable biliary tract cancer were enrolled in this study.
  • After resecting the tumor, patients were randomized into two groups, including
  • 223 patients received adjuvant Capecitabine 1,250 mg/m2 twice daily on days 1-14 of a 21-day cycle, for eight cycles.
  • 223 patients were kept under observation only.
  • Patients were kept under follow-up until January 2021, with an average follow-up time of 106 months to identify differences in patient overall survival (OS) rate.
  • The median OS was 49.6 months in the capecitabine group compared with 36.1 months in the observation group.
  • After adjusting for other factors affecting patient survival like gender, lymph nodes involvement, and tumor grade, the authors found that Capecitabine reduced disease risk by 26% compared with observation only. 

In conclusion, the use of Capecitabine can improve OS in patients with resected biliary tract cancer when used as adjuvant chemotherapy after surgery. 
TeamCCF has filled all 25 bibs for the Bank of America Chicago Marathon! We have ten bibs for the TCS New York Marathon takes place on November 6, 2022. Please email Meredith McGuffage, TeamCCF Coordinator, for more information.
Good luck to our TeamCCF members this month!
  • Emily Joseph will run the Schneider Electric Marathon of Paris on April 3 in honor of her mom, Morfenia.
  • Emily Galloway will run the Carmel Half Marathon on April 9 in memory of her good friend, Flip.
  • Abby Rudolph will run the Brooklyn Half Marathon on April 24 in memory of her Uncle Jack.
Emily Joseph and her mom, Morfenia Joseph.
Emily Galloway and her good friend, Flip.
A young Abby Rudolph with her Uncle Jack.
Here is a highlight of one upcoming, fantastic volunteer-hosted event that you don’t want to miss if you are in the area: 

The 3rd Annual “Quack Out Cholangio” 5k Run/Walk to Crush Bile Duct Cancer will take place Saturday, May 14, 2022, at Midnight Oil Brewing Company in Newark, DE. This event is put on by Cholangiocarcinoma Warrior, Janice Meyer, and her husband, Dean Meyer, who is also a Cholangiocarcinoma Foundation Board Member. You can sign up to participate in the upcoming event either in-person or virtually by clicking HERE. Check out highlights from last year's race HERE.

Long-Term Survivor
Matt Reidy
Hope was honestly difficult to hold onto at times. After successful resection in January 2014, I had a sliver of real hope, but it was dashed with recurrence at my one-year check-up.

My physicians did not make me more, or less, hopeful. Knowing that survival beyond five years was a source of hope for me, such as Melinda [Bachini's} life shows. I would encourage other patients to connect with long-term survivors or read our stories as a source of hope.
Need a gift for Mother's Day? Use the promotion code MOM25 during the week of April 24 - May 7 and receive 25% off your order.

The Awareness Store has added new items including a zip-up sweatshirt in gray or white, a coffee mug, and a Tree of Life necklace. Make sure to check out the clearance section also. The 2022 Conference shirt is now $15 and CCF tote bags are $2.50.
CCF is in need of support from persons who are multilingual. Language barriers can put patients at greater risk of misinformation and unclear treatment paths. If you are multilingual and have language skills you are willing to share to support CholangioConnect mentor requests and/or other volunteer administrative needs please let us know by completing this brief Language Skillset Survey.
CholangioConnect Mentors
CholangioConnect Mentors offer encouragement. Mentors help others through difficult periods of diagnosis, treatment, and when needed, palliative care which can be extremely stressful and confusing. Mentors are cholangiocarcinoma survivors, patients, caregivers, family members or friends of cholangiocarcinoma patients. The service is free and is intended to offer support, not to give medical advice or recommendations. Any information shared between mentors and patients concerning treatments, medications or therapies should be discussed with a physician.

The Foundation is actively recruiting mentors. If you would like to learn more please click the button below.
"I realize just how fortunate that I have been, so the least I can do is to share my time with others." Jim Hoofnagle
Amplify your impact by submitting your hours. CCF regularly applies for grants that require details, including monthly hours, on support provided specifically by volunteers. Accurately recording all CCF volunteer hours helps further strengthen CCF's grant application. Thank you for taking the time to submit your hours! If you have not already done so, please follow the appropriate button below to submit your March hours.
Cholangiocarcinoma Foundation | (888) 936-6731 | info@cholangiocarcinoma.org | cholangiocarcinoma.org