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.
Learn more about the impact of volunteers and community members by reading their stories this week.
After receiving a cholangiocarcinoma diagnosis, Christina knew she would hear some difficult things but “snap out of it” wasn’t on the list. Shared by a fellow patient and hard to hear at first, they were just the words Christina needed to hear.
In September 2021, Christina was diagnosed with CCA and was connected to the Cholangiocarcinoma Foundation through her cousin and quickly paired with mentor Bekki Slater. She also developed new connections with other patients. It was from one of these patients she got the words she did not expect to hear from one of those new friends.
After her surgeon had to halt her surgery, Christina felt at a loss for determining what to do next. That is when fellow patient Jan Meyer got direct and asked Christina to seek a second opinion. The words “snap out of it” were an impetus for taking decisive next steps.
Christina found an excellent doctor and completed 14 months of chemotherapy. In her own words, Jan was her guardian angel. With that patient-to-patient support, she continues treatment with a positive outlook. The camaraderie and help continue to be powerful for Christina, her husband, and two teenage children, who are her world.
Inspired by the deep connections she has made during this journey, Christina knew she was ready to start mentoring. She hopes to help people get through those first few months of diagnosis.
“The first few months are filled with terror,” she says. “I want to offer hope and companionship to help those going through it.”
Christina encourages fellow patients to take it one day at a time and do anything that gives them autonomy and a sense of control. For Christina, this includes naming her tumor “Bob and the Sprinkles.”
Christina shares that her cancer diagnosis doesn’t mean she has to stop living; it means she has had to learn to live in a new way.
Guardian Angel and friend Jan Meyer shares, “When Christina is around, it’s always high energy and lots of laughs. She’s one of the smartest, bravest, kindest, most loving women I have ever met. The world needs more Christinas.”
Full of love and laughter, Christina has made advocacy and mentorship a part of her daily life. During a recent treatment visit, she inquired about a patient’s diagnosis. When the woman shared that it was CCA, Christina exclaimed, “Get out of dodge! Today is your lucky day; I will sit next to you!”
Christina, the Foundation is amazed by your positivity and strength and how you connect with others. Thank you for the laughter, hope, and compassion you provide.
Steve was diagnosed with cholangiocarcinoma (CCA) in 2016. He recalls in the early years of his diagnosis when there was little support for people with CCA. “My loyal cat was my mentor,” he shares jokingly.
Steve is grateful for his nurse navigator and insurance case manager's support during his treatment. His disease was not progressing, but in 2021, they saw some growth. Steve jumped to participate in a clinical trial. He underwent another two years of treatment and is gearing up for a new clinical trial this summer.
Steve has enjoyed watching the Cholangiocarcinoma Foundation grow and has been an active community member, participating in the Annual Conference and support groups. Thanks to the encouragement from Fred Koehl, Steve became a CholangioConnect patient mentor. Steve enjoys this accelerated way to get to know people. Unlike most relationships, these don’t start with much small talk. Steve says it is an honor and privilege to support someone else at this time in their life. In turn, Steve also receives support from his mentees. Steve recalls, in particular, the kindness his mentee showed him during Steve’s most recent scans.
Steve fully embraces that he receives treatment to live. Steve and his wife Bonnie enjoy traveling and strive to take one big trip each year. As a hobby, they raise Navajo-Churro sheep. Steve says much of the credit goes to his wife.
As a mentor, Steve hopes to help mentees manage anxiety around their diagnosis. Steve remarked that energy is precious and patients don’t have much to waste. He also hopes to ensure mentees know all the possibilities for their treatment. Steve knows he doesn’t have all the answers; he also knows this isn’t his role as a mentor. He is present with his mentees to listen, encourage, and walk alongside them as they face their diagnosis.
Steve, the Foundation thanks you for the many ways you support patients and is grateful for the example and guidance you give.
Neil Marr is an avid volunteer who is focused on supporting others and driving change. His volunteerism has supported the Foundation’s mission, spread awareness, and created effective partnerships. Additionally, Neil has met with the Canadian government, pharmaceutical companies, and Canadian organizations to address issues specific to Canada.
Neil says that one of his favorite parts of volunteering is the people he has had the opportunity to work with. Neil speaks highly of the people he’s met.
Simply put, he shares, “They are truly quality people.” He embraces each opportunity to make new connections.
As a former caregiver to his wife, Priscilla, Neil knows the importance of access to information and treatment, and the vital role support plays in a family’s journey with cholangiocarcinoma.
He says of his involvement, “I’m highly motivated to help as many people as I can. I want to stay on the cutting edge.”
Neil and his wife were married for 38 years. The pair would lovingly joke that they “actually like each other.” They have two adult daughters and seven grandchildren. Neil and Priscilla enjoyed, and were heavily involved in, theater.
Priscilla was a highly regarded costume designer, and Neil is a playwright and director. Fellow Canadian caregiver, Ambuj Srivastava, attended Neil’s most most recent play. It was Neil’s first time directing since his wife’s passing and the first time Neil and Ambuj met face-to-face; a meaningful night for both of them.
Neil humbly says of his volunteerism, “I’m just doing little things here and there.”
Neil also shares that he is thankful to see how these “little things” add up to help drive progress and is honored to have the opportunity to be a part of the important work. The Foundation is deeply grateful that Neil has chosen to share his determination and compassion with the CCA community.
Emma Villamater is part of a tight-knit, loving family and calls her mother, Ally, her “bestie.” When Emma was in the 8th grade, her father made her a promise: If she took Advanced Placement French, he would take her to Paris. Emma did not forget this promise. After graduating college, she decided the wait should be over. Despite a hectic summer, including her younger brother preparing for his first year of college, her mother set aside the time for this memorable trip. The pair are grateful for the special experience they had.
On their flight home, Ally became sick. After a month-and-a-half of searching for answers, in August 2022, she was diagnosed with stage 4 cholangiocarcinoma. Ally was enrolled in a clinical trial and recently started a new trial. Emma is grateful for the support and flexibility her work has given her, which allows her to spend as much time at home as possible.
Emma’s family is full of marathon runners, including her grandfather, uncle, mother, and father. Ally, who has completed multiple marathons, was preparing to run the New York Marathon before being diagnosed. Emma, a former cross-country runner, decided to run the marathon for her mom.
Emma connected with Meredith McGuffage, TeamCCF Coordinator, thanks to an Instagram post. Excited to receive a bib for the NY marathon, she began training and fundaisring. Emma, an experienced fundraiser who supported other causes close to her family and community, set her goal at $5,000. Within 24 hours, she raised $20,000.
“The response was a testament to how much people love my mom and how much she is involved in people’s lives. It was great to see how much love I am surrounded by.” In addition to raising these crucial funds, Emma notes another impact; “People are beginning to ask questions and learn what cholangiocarcinoma is.”
Though it is difficult, Emma shared, “I try to keep the mentality that every day more with my mom is a gift because her original diagnosis was three months and it’s almost been a year.”
Ally told Emma, “I want to watch you on 1st Avenue.” Having run the marathon two times, Ally identifies this as the most challenging stretch and plans to be the supportive presence to help Emma keep going.
Emma, the Cholangiocarcinoma Foundation is grateful for your support! We send you encouragement as you continue to train and create new memories with your mom. Thank you for sharing a piece of your story with us and furthering CCF’s important work.
Dave McMahon has been an avid runner for years. However, he jokes that he thought only Olympians ran marathons before he knew his wife, Jodi. “Jodi is who got me into marathons,” says Dave. When the couple met, Jodi was training for the Chicago marathon. Then they pair decided to train together for San Diego. “That’s really where we got to know each other. Just running.” Now running is a part of his life. He has completed 12 marathons and runs regularly with a group in his community.
In 2022, Dave was excited to run the New York Marathon for the first time. Two weeks before the marathon, Jodi was diagnosed with cholangiocarcinoma. Jodi, who was big into experiences, encouraged Dave to run the marathon still. Dave says Jodi was on his mind the entire time. A friend of Dave’s was waiting at mile 23 with Jodi and their children on Facetime. Dave paused to enjoy the love and encouragement of his family.
Upon his return, he knew he wanted to run again. This time he wanted to run for the Cholangiocarcinoma Foundation, and he connected with Meredith McGuffage, TeamCCF Coordinator. Sadly, Jodi passed away in January of 2023. After her passing, Dave was even more determined to run the NY marathon in Jodi’s memory. Dave has also recruited a friend to run with him.
In addition to raising awareness through his involvement, Dave is also raising critical funds. Through a simple text message (Dave does not use social media), he has already raised over $16,000.
Dave shares that doing something greater than himself makes him feel better. “Unfortunately, we have a very short time. But through our grief, we can give hope to someone down the line. Anything we can do for awareness for an aggressive disease like this is critical.”
The Cholangiocarcinoma Foundation is grateful that Dave has paired his joy of running with his passion for making a difference. Dave, CCF is cheering you on!
Due to evolving communication strategies, we have made the decision to start sending out our Five for Friday email every other week instead of weekly.
Be on the lookout for the next Five for Friday email on Aug 25, 2023.
If you have something you'd like to share, please reach out to Allison Deragon at email@example.com.