Volunteers make great strides in raising awareness and funding research for the Cholangiocarcinoma Foundation


SALT LAKE CITY, UT – In 2021, volunteers from the Cholangiocarcinoma Foundation (CCF) made great strides in raising awareness and funding research to make deadly bile duct cancer treatable. The support and management of volunteers was recently recognized by the Utah Nonprofit Association which awarded the Foundation its volunteer management badge.

“We s

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

Each year, the Independent Sector collects data and conducts research on volunteering in the non-profit sector. The results of this research provide a way for nonprofit organizations to calculate the value of time spent volunteering. As of April 2021, the estimated national value of every hour volunteered is currently $ 28.54. Foundation volunteers donated more than 25,000 hours of service in 2021 – which equates to $ 713,500 – reaching out to more than 476,000 people.

“I am constantly inspired by the work of volunteers with their creativity and innovation. It is an honor to share their efforts. CCF volunteers are dedicated and motivated to make cholangiocarcinoma a treatable disease, ”said Melinda Bachini, Foundation Director of Advocacy. “Their efforts are change and hope for a better future.”

Almost 300 people from across the country volunteer for the Foundation by sponsoring fundraisers, supporting patients, sharing information and more. These people are responsible for setting up and taking down the annual conference, staffing various information booths, hosting workshops, and helping to make the three-day event a smooth experience. They also help with data entry and research, social media, discussion board moderation, and special events.

Additionally, volunteers serve as research advocates who connect patients with scientific research to promote education and effect change. They also serve as mentors in the CholangioConnect program to help others go through difficult times of diagnosis, treatment and, if necessary, palliative care which can be extremely stressful and confusing. Mentors are cholangiocarcinoma (CCA) survivors, patients, caregivers, family members or friends of patients with CCA. This year marked the 500th game – a milestone in the program.

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

  • 15th Anniversary Fund: Steering Committee co-chaired by Barbara DuPont and Kelley Giles – raised over $ 150,000.
  • Journey of Hope by David Fleischer – a 15,000 mile trek across the country with stops in named towns Hope which raised awareness and over $ 105,000.
  • Northshore Oktoberfest by Heidi Rhea (CCA survivor) – Founded “A Rhea of ​​Hope” and raised over $ 50,000.
  • Quack Out Cholangio 5K Run / Walk to Crush Bile Duct Cancer by Janice Meyer (CCA survivor) – raised over $ 165,000 and was 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 December 2019.
  • Patty Maxin, CCF board member, provided nearly 1,600 hours of service in 2021.

“What I get from volunteering for Foundations is making friendships, actually new families,” said Maxin. “It is also an opportunity for me to remember my husband, Mike, who died of cholangiocarcinoma. I am asked about him and I can talk about him … Mostly, it’s the exceptional friendships. There is nothing like it.

The Foundation’s volunteer community, with many active volunteers wearing many hats, eagerly pushes forward the work in all aspects of the organization’s mission. Professional working committees, such as the Nursing Advisory Council, educate nurses to improve patient care, while social media volunteers and bloggers share their stories to support awareness and fundraising efforts. Foundation Volunteer Coordinator Cindy Thomas explained the extra efforts of volunteers.

“Research advocates are putting the voice of patients at the forefront as CholangioConnect mentors share essential resources and friendship during an incredibly overwhelming diagnostic period,” said Thomas. “And during the 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 hesitate to tackle it. Thanks to their courageous leadership, the goal was achieved.

Anyone interested in becoming a volunteer is encouraged to register online at https://cholangiocarcinoma.org/volunteer-program/. The annual Light a Candle for Healing campaign is active throughout the month of December. Volunteers are welcomed and invited to light a candle in honor of a loved one who has been touched by CCA. Donations are also accepted.

About cholangiocarcinoma:
Cholangiocarcinoma, pronounced (koh-LAN-jee-oh-KAR-sih-NOH-muh), is a highly fatal and rare cancer of the bile ducts of the liver with a poor prognosis. With approximately 10,000 cases diagnosed each year in the United States, cholangiocarcinoma is the second most common primary liver cancer in the world. It is often diagnosed at advanced stages when treatment is ineffective, pointing to the imminent need for new therapies.

About the Cholangiocarcinoma Foundation:
Founded in 2006, the Cholangiocarcinoma Foundation is a 501c3 global non-profit organization. Its mission is to support patients and make cholangiocarcinoma a treatable disease. CCF supports basic and translational research and educates the cholangiocarcinoma community through advocacy, education, collaboration and research. For more information, please visit our website at cholangiocarcinoma.org.


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