volunteer-program

CCF Volunteer Program



Volunteer Spotlight – Lauren Rosati

  • Lauren Rosati has volunteered with the Foundation since 2014 and has since decided to pursue a career as an MD to seek to follow her passion of helping the patient. In her second year of medical school, with an extremely busy study schedule, she continues to find time to volunteer with the Foundation in numerous programs such as fundraising, grant writing, the Nursing Advisory Board and the CARE Team, just to mention a few.
  • It was during her senior year of undergraduate work at Clemson that Lauren’s stepdad received his diagnosis of cholangiocarcinoma. She became his caregiver, and helped him navigate the clinical trial process. With complications in her stepdad’s health, he eventually was told he did not qualify for any further clinical trials. Adamantly, following that conversation with clinicians she decided to pursue her career in medicine as a doctor to be a force for change. She did not want other patients to have to hear that same narrative.
  • Lauren has a unique perspective as a previous caregiver, an experienced research assistant, a grant writer, and a medical student that makes for a volunteer who understands so much and helps to improve every program she is involved with. She has brought many ideas to the Foundation when volunteers were extremely few in number and has brought them to completion. Lauren’s favorite event is the Annual Conference and loves that it is so unique in the fact that it is heavily patient driven. In October she cheered on the Chicago Marathon runners with her fellow CARE Team members who she says “are just like family.” Lauren continues to volunteer despite her demanding schedule because she says “I feel my happiest when I do. It’s my savior and my coping mechanism.”
  • The Foundation would like to take this opportunity to thank Lauren Rosati for every effort, her energy and ideas, as well as her dedication and commitment. It is a privilege to honor her as 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.


Resources

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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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