Volunteers make big strides with raising awareness, funding research for the Cholangiocarcinoma Foundation

In 2021, volunteers for the Cholangiocarcinoma Foundation (Foundation) made big strides in raising awareness and funding research to render the lethal bile duct cancer treatable. Supporting and managing the volunteers was recently recognized by the Utah Nonprofit Association that awarded the Foundation with its credential badge for volunteer management.

“We see this achievement as the result of your personal and organizational commitment to excellence,” stated Kate Rubalcava, Association CEO, in a congratulatory letter to the Foundation. “It also serves as an inspiration and example to both your organization and the nonprofit community.”

Each year, Independent Sector gathers data and conducts research on volunteerism in the nonprofit sector. The results of that research provide nonprofits with a way to calculate the value of volunteer time. As of April 2021, the estimated national value of each volunteer hour is currently $28.54. Foundation volunteers gave more than 25,000 hours of services in 2021 - which is equivalent to $713,500 - raising awareness to more than 476,000 people.

“I am constantly inspired by the creative and innovative work of the volunteers.  It is an honor for us to work closely with them and to share the strides they are making. These are dedicated volunteers who are making every effort to improve the lives of patients,” said Director of Advocacy Melinda Bachini. “Every hour they spend adds hope for a brighter future.”

Nearly 300 people from around the nation volunteer with the Foundation by sponsoring fundraisers, supporting patients, sharing information, and much more. These individuals help run the annual conference by staffing information booths, hosting workshop sessions, and many other activities which all help the three-day event run smoothly. Volunteers also run a variety of programs, help with data entry and research, social media, discussion board moderation, and special events. Unlike lung cancer, which is staggeringly common, and people are aware of its prevalence, bile duct cancer still requires plenty of ongoing education and awareness-raising.

Additionally, volunteers serve as research advocates linking patients to scientific and translational research. They serve as mentors in the CholangioConnect program to help other patients through diagnosis, treatment, and when needed, palliative care.  Mentors are cholangiocarcinoma (CCA) survivors, caregivers, family members or friends of CCA patients. This year marked the 500th match between a mentor and a mentee through the CholangioConnect program.

Some volunteer efforts and community impact events spearheaded by members of the CCA community include:

• 15th Anniversary Fund: Steering Committee Co-Chaired by Barbara DuPont and Kelley Giles - raised more than $150,000.
• Journey of Hope by David Fleischer - a 15,000-mile trek across the country with stops in cities named Hope that raised awareness and more than $105,000.
• Northshore Oktoberfest by Heidi Rhea (CCA survivor) - founded “A Rhea of Hope” and has raised more than $50,000.
• Quack Out Cholangio 5K Run/Walk to Crush Bile Duct Cancer by Janice Meyer (CCA survivor) - raised more than $65,000 and recently featured in Reader’s Digest.
• A MATTer of Hope by Christine Sgambato - raised nearly $25,000 after losing her husband, Matt, to CCA in Dec. 2019.
• CCF Board of Directors Member Patty Maxin - has rendered nearly 1,600 hours of service in 2021.

“What I get by volunteering for the Foundation is creating friendships, actually creating new families,” said Maxin. “It’s also the opportunity I get to remember my husband, Mike, who passed from cholangiocarcinoma. I get asked about him and I get to talk about him... Mostly, it’s the outstanding friendships. There’s nothing like it.”

The Foundation’s volunteer community is active and robust and contributes to moving the work ahead in every aspect of the organization’s mission. Working professional committees, such as the International Cholangiocarcinoma Research Network, Scientific & Medical Advisory Board, and Nursing Advisory Board, educate medical professionals for improved patient care. Also, social media volunteers and bloggers share their stories to support awareness and fundraising efforts. Foundation Volunteer Coordinator Cindy Thomas elaborated on additional volunteer efforts.

“Research advocates place the patient voice at the forefront while CholangioConnect mentors share critical resources and friendship during an incredibly overwhelming time of diagnosis,” said Thomas. “And during CCF’s 15th anniversary year a volunteer-led steering committee led the charge to raise an additional $150,000 to fund three new research grants. This was an exceptionally large goal and undertaking, and the volunteers did not shy away from the work. With their courageous leadership, the goal was met.”

 Anyone interested in becoming a volunteer is encouraged to sign up online at https://cholangiocarcinoma.org/volunteer-program/. The annual Light A Candle For the Cure campaign is active through the month of December. Volunteers are welcomed and invited to light a candle in tribute to a loved one who has been impacted by CCA. Donations are also accepted.