CCF Volunteer Program

Volunteer Spotlight – Alie Plouff

  • Alie Plouff’s road to volunteering began after her mother was diagnosed with cholangiocarcinoma. Her mother was a nurse and instinctively knew she would have to research and be proactive in seeking treatment for her disease. Alie fully supported her mother and became a caregiver. After discovering the Foundation, Alie attended her first annual conference in 2017, with her entire family, and immediately knew she wanted to get involved with the Foundation. Why? Because she saw first hand how patients received the support they needed – the encouragement, the support, the resources, and the hope. The experience was extremely positive for her mother, even attending the conference while in hospice care.
  • At that time the CholangioConnect program was fairly new, and after hearing about the program during that conference, Alie began volunteering as a mentor. She knew it would be helpful to so many others. Alie has mentored many over the last few years and feels it is one of the most rewarding things she has done as a volunteer. She understands the stress caregivers are under, having seen it all first hand herself, and has a desire to alleviate some of that stress for others. Her goals as a mentor include being a good listener, a neutral party, support, and most importantly a friend in a time of need. But her desire to help did not stop there. With an eagerness to do more, she also began taking on administrative projects, followed by conference volunteering, joining the Social Media Team, and is currently spearheading another CARE Team launch on the East Coast. Alie loves volunteering and has made it an important focus in her life. For her, it turns her grieving process into a positive direction. She says it’s effortless to get started, and enjoys the time helping others. She loves the friendships that come through volunteering.
  • Does she have time for anything else? It seems she does, as she is currently a full time student in a master’s program for occupational therapy. Alie is from New England and loves to spend time at the beach. She loves her dog, Brady, and is a big New England Patriot football fan.
  • It is a great honor and privilege for the Foundation to recognize Alie Plouff as the Volunteer of the Month!

New Opportunities

Thank you for your interest in volunteering with the Cholangiocarcinoma Foundation. We have a variety of different opportunities available at different times of the year.

Purpose: Research advocates serve to link patients to scientific research to promote education and bring about change. Key Responsibilities:

  • Helps patients understand medical research and scientific concepts;
  • Keeps current on research and clinical trials available with ongoing required training and monthly meeting attendance; and
  • Brings patient perspective on research activities to scientific advisory boards and committees.

Program Manager: Melinda Bachini Location: Work-from-home, candidates work from their residence. Qualifications: High level of diplomacy, confidentiality, integrity and initiative. Pleasant manner, and dependability.

Purpose: Patient advocates focus on the emotional support for the patient and help to guide a patient through the healthcare system. Key Responsibilities:

  • Supports patient through the screening, diagnosis, and treatment processes;
  • Empowers patients to better communicate with healthcare providers, and helps to get necessary and current information to the patient in order for the patient to make the very best decisions about their healthcare choices;
  • May also help patients find referrals to experienced cholangiocarcinoma providers in their area; and
  • Provides guidance and hope to patients.

Program Manager: Melinda Bachini Location: Work-from-home, candidate works from their residence. Qualifications: High level of compassion, confidentiality, integrity, and initiative . Pleasant manner, and dependability.

Purpose: 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. Key Responsibilities:

  • Creates personalized connections that enable one-on-one support among cholangiocarcinoma fighters, survivors and caregivers;
  • Builds peer-to-peer connections and help anyone touched by cholangiocarcinoma, at any stage in their journey.

Program Manager: Patricia Maxin Location: Work-from-home, candidates will work from their residence. Qualifications: High levels of compassion, diplomacy, integrity, and initiative. Strong communication and organizational skills a plus. Learn More

Purpose: CARE Team Members work to positively impact the lives of cholangiocarcinoma patients through advocacy, research and education. Key responsibilities:

  • Helps spread awareness in communities, including local events, hospitals and clinics;
  • Creates, attends and supports local fundraising efforts; and
  • Educates about the cancer, research and clinical trials.

Program Manager: Melinda Bachini Location: Open location: anywhere in the world. Qualifications: Initiative, dependability, and organizational skills a plus.

Purpose: Fundraisers organize activities to raise money or otherwise solicit and gather cash or in-kind donations or other gifts for the Foundation. Key Responsibilities:

  • Organizes and carry out events, either online or in their communities;
  • Distributes educational material and awareness bracelets and giveaways;
  • Publicizes events; and
  • Raises awareness of the Foundation’s work, goals and financial needs.

Program Manager: Kathi Wagner Location: Open location: anywhere in the world

Purpose: Social Media Influencers work to recognize and support people hosting social media fundraisers, spread awareness of the Foundation’s mission, and research and develop social media campaigns. Key responsibilities:

  • Supports our current online fundraisers in their efforts through social media;
  • Develops relationships, including businesses, to create social media campaigns that increase awareness and expand our social media following;
  • Improves our social media programs and campaigns; and
  • Researches articles/events that promote the Foundation’s mission and spread awareness.

Program Manager: Jordan Giles Location: Work-from-home, candidates work from their residence. Qualifications: High level of diplomacy, integrity and initiative. Ability to build effective relationship networks with a diverse variety of people (inside and outside the Foundation). Familiarity with various social media platforms and high visibility a plus.

Purpose: Discussion Board Moderators facilitate discussions where users may exchange information, opinions, thoughts or theories in an atmosphere of mutual respect. Key Responsibilities:

  • Welcomes new patients and caregivers to the discussion board community;
  • Promotes awareness and education;
  • Communicates to users the current status of treatments and research in the field of Cholangiocarcinoma; and
  • Exercises care to recommend that medical questions be directed to experienced medical providers (moderators do not themselves provide medical advice).

Program Manager: Melinda Bachini Location: Work-from-home, candidates work from their residence Qualifications: Experience as a Cholangiocarcinoma patient, caregiver or family member, strong communication and writing skills a plus.

Purpose: Data Entry and Research Clerks complete various data entry, online research, and administrative projects and support the administrative staff. Key Responsibilities:

  • Keeps track of received data and documents;
  • Searches the internet to dcollect data as needed;
  • Inputs collected data into an electronic spreadsheet or database;
  • Ensures that all data is entered accurately;
  • Reviews all information entered and make corrections where necessary;
  • Maintains confidentiality of all data entered; and
  • Performs other clerical duties as required.

Program Manager: Kathi Wagner Location: Work-from-home, candidates will work from their residence. Qualifications: Basic knowledge of computer and data entry, comfortable searching the internet, with familiarity in Excel and database management a plus. Pleasant manner, problem-solving ability, and dependability.

Purpose: Annual Conference Volunteers staff various information booths, set up and take down booths, host workshop sessions, and help to make the Annual Conference a smooth experience for everyone. Key responsibilities:

  • Greets attendees;
  • Assists with admissions;
  • Sets up and takes down booths/workshop stations;
  • Assists at hospitality areas; and
  • Monitors general events and manages crowd flow.
  • Additionally, our Annual Conference Volunteers must be able to do the following:
    • Attends the conference on the required day;
    • Assists daily with setup and take down;
    • Ensures availability to work during the conference sessions (NOTE: Volunteers will not be able to attend every session of conference). Fills various assignments including staffing registration table, CCF store, Patient Lounge, and hosting various workshop sessions; and
    • Attends daily morning and evening meetings.

Program Manager: Jordan Giles Location: Salt Lake City, UT Qualifications: Pleasant manner, patience, and problem-solving skills a plus.

Purpose: Special Events Volunteers support local events and represent the Foundation. Key responsibilities:

  • Attends local events that support the Foundation;
  • May include hosting an information booth while passing out educational materials;
  • Supports other volunteers/fundraisers at local events such as marathons or health fairs; and
  • May include cheering on marathon runners.

Program Manager: Varies Location: Open location: anywhere in the world. Qualifications: Pleasant manner.


Text about the resources below.

Jordan Giles is the Foundation’s Volunteer Coordinator. Jordan has been a volunteer himself with the Foundation for many years and was hired on as a full-time staff member in November 2017. Jordan graduated with his Master’s in Public Administration from the University of Utah. If you have any question regarding the Foundation’s volunteer program, please contact Jordan at Jordan.Giles@cholangiocarcinoma.org  
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