CCF Volunteer Program

Volunteer Spotlight – Lisa Craine

  • Lisa Craine is a mother of two sons and is also married to her high school sweetheart, David. She is 100% Italian and loves to spend time in the kitchen cooking for her family. She was diagnosed with Stage IV Intrahepatic Cholangiocarcinoma in 2010 and given only six months to live. It has been a tough journey with two liver resections, 52 rounds of chemo in four different regimens, radiation three times and other complications, but Lisa manages to find the joy in her journey. Now she views the difficult times as life experience and feels it’s those things that make her a better advocate with more compassion.
  • Lisa connected with the Foundation after getting acquainted with the patient discussion boards. She reached out to a fellow patient after reading an article about her and felt like that began to offer her a lot of hope. She no longer felt isolated and alone on an island of a rare cancer. Lisa’s second opinion team, which she calls her “Survivor Partner Team” never took away her hope either. That is the hope she desires to share with other patients and families. Lisa has mentored dozens of patients through the CholangioConnect program, but is also actively involved in mentoring with the Cleveland Clinic Foundation, the Scott Hamilton CARES Foundation and Imerman’s Angels. She and her husband, David, founded Craine’s Cholangiocarcinoma Crew and together have raised over $205,000 strictly for research.
  • Additionally Lisa serves as a Research Advocate, Patient Advocate and is a member of the CARE Team. She helped to organize the CARE Team’s first mini-symposium last year, and has a second event planned for this summer in Chicago. She has given countless hours to patients all over the country, and often finds herself chair side of local patients undergoing treatment. Lisa helps others navigate second opinions, clinical trials and new treatment options every week over the phone. Lisa has presented her story at multiple conferences and is a passionate voice for rare cancer. Her dedication to passing hope on to others is clearly evident in all she does. It is a great honor and privilege for the Foundation to recognize Lisa Craine 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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