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CCF Volunteer Program

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April's Volunteer Spotlight - Nancy Elson

Nancy volunteers as a Research Advocate with incredible support from her family.

A native of Ontario, Canada, Nancy Elson now resides in Edmonton, Alberta. She has a beautiful family with three adult children. She enjoys spending quality time with them at their summer lake house in Ontario. She has also enjoyed a long career in Human Resources.

Nancy was diagnosed with cholangiocarcinoma in January of 2018 and given eight months to get her affairs in order. She began asking herself, “What do I do now?” and ‘Where do I go from here?” She was grasping at any and all options and was determined the eight-month plan laid out for her was not an acceptable one. She stumbled upon the patient Facebook groups but felt like somewhat of an outlier as she was outside of the USA and knew there was not much Canadian engagement. She decided to begin volunteering at the Cholangiocarcinoma Foundation (CCF) to help her get close to the science and resources and learn about her international options. 

After inquiring about a medical assessment in the states, she was told the initial assessment alone would total $62,000. She was ready to move forward no matter the cost but thankfully was accepted to be seen in Toronto and was scheduled for surgery just days after her evaluation there. 

Nancy serves as a Research Advocate and has gained a tremendous amount of knowledge. She has gone through two rounds of Gemcitabine and Cisplatin and three clinical trials in a year, after about a year with no evidence of disease. She encourages others to be their own best advocate. Nancy shares that at one point, a provider’s office told her that it would take six weeks to gather her medical records - the ultrasounds, the biopsies, the CT scans, etc. Nancy immediately thought, “I’m not waiting!” She knew she didn’t have six weeks and told the provider’s office that she would sit in the lobby playing Candy Crush until they had the reports needed. 

Similarly, she pushed back to oncologists that asked her, “What good will genomic testing do?” No matter the cost, Nancy knew the testing was critical. These are just a few of the reasons Nancy now volunteers to move advocacy work forward. Patient education is crucial for the proper treatment. She currently works to educate oncologists on the importance of genomic testing, amongst other things. She is passionate about educating patients about the testing, as she knows many will not be tested at all for fear of the expense. She works to change that. Nancy also worked to light the Calgary Tower in Toronto and the High Level Bridge in Edmonton green to shine a light on cholangiocarcinoma during February’s Awareness Month. It is a great honor and privilege to recognize Nancy Elston as Volunteer of the Month. 

New Volunteer Opportunities

Cindy Thomas is the Foundation's Volunteer Coordinator.

Cindy received a Bachelor of Science degree from Brigham Young University and has enjoyed working with the Foundation since June of 2018 as a part time staff member.

If you have any questions regarding the Foundation's volunteer programs, please contact Cindy at cindy.thomas@cholangiocarcinoma.org.

cindy