The Cholangiocarcinoma Foundation is celebrating the 1,000th mentor-mentee match and six years of their mentoring program CholangioConnect. CCF, a nonprofit organization funding novel research for bile duct cancer, has developed unique resource programs to help patients and caregivers navigate their healthcare journey.
Cholangiocarcinoma is a type of cancer that forms in the bile ducts of the liver. Biliary tract cancers (BTC) are uncommon and can be highly fatal. BTCs include intrahepatic and extrahepatic cholangiocarcinomas and gall bladder cancer each having different genetics, risk factors and clinical presentation. With approximately 10,000 cases of cholangiocarcinoma being diagnosed in the U.S. each year, bile duct cancer is the second most common primary liver cancer in the world. It is often diagnosed at advanced stages when treatment is minimally effective, emphasizing the urgent need for novel therapies and strong patient support.
CCF's CholangioConnect creates personalized connections that enable one-on-one support among cholangiocarcinoma patients, survivors, and caregivers. New members are connected to a mentor who has experience with the disease and can offer one-on-one support.. The CholangioConnect program has expanded to meet the needs of patients and caregivers and is offering mentorship to those living in the U.S. and 31 other countries.
"Our CholangioConnect staff have a keen sense of what our patients and caregivers need and match them with mentors who have walked in their shoes," said Stacie Lindsey, CCF's Founder and CEO. "We celebrate the 1,000 strong connections made over the last six years while also focusing on innovative research that leads to new treatments and a cure, and strengthening the support network that improves the quality of life for oupatients."
The program's concept was developed when a patient and her husband worked with CCF to develop a way to formalize connecting those navigating the course of the rare disease to those who had experience.
Patty Maxin, caregiver to her husband Mike Lu who passed away in 2015, became CholangioConnect's first program manager. She has also served as a patient and research advocate and on the CCF Board of Directors.
"Patients and caregivers give selflessly in order to walk alongside others who are in need of a helping hand, an 'ear,' or just the confirmation that they are not in this alone," Maxin said of the CholangioConnect mentors.
CholangioConnect mentors receive training and support materials and are assigned mentees who they support through phone calls, email, and participation in virtual support groups. Mentoring services are tailored to fit the needs of the mentees and time and availability of the mentors.
"Mentors of CholangioConnect understand by experience, the fear and loneliness of this diagnosis, as all volunteers have a personal relationship with bile duct cancer," Maxin said. "Profound bonds are forged, and mentorships give way to lasting friendships that are sometimes only possible when both parties emotionally respond to a common adversity. They show us courage and the opportunity to witness humanity at its best."
Rob Howard provided care to his father who was battling cholangiocarcinoma. Howard was paired with a mentor through CholangioConnect and now he provides the same support to other caregivers.
"The truth is simple: The CholangioConnect program fundamentally changed how I navigated the uncertain and scary world of my dad's diagnosis," Howard said. "My initial phone call with my mentor lasted over an hour and I went from feeling scared and alone, to feeling informed, hopeful, and more equipped to face the uncertain times ahead for my dad and our family."
Completing 1,000 connections between mentors and mentees means 1,000 patients and caregivers have received strong emotional support, tailored resources, and a support network. It also underscores the need for life-saving treatments.
In celebrating six successful years of the CholangioConnect, CCF is expanding the program to serve even more people in need of support. To learn more about CholangioConnect and to be assigned or become a mentor, visit cholangiocconnect.org.
"My initial phone call with my mentor lasted over an hour and I went from feeling scared and alone, to feeling informed, hopeful, and more equipped to face the uncertain times ahead for my dad and our family."