- YOU DID IT!
- SUPPORT GROUPS
- VOLUNTEER OF THE MONTH
- TEAMCCF UPDATE
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- 15TH ANNIVERSARY HAPPENINGS
- CCF AWARENESS STORE
- VOLUNTEER TRAINING AND NEEDS
- UPCOMING EVENTS
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The 8th Annual Conference is here! A very special thank you to the many volunteers who shared their hope with us. Throughout March, CCF has shared photos of volunteers being the hope! Thanks to the enormous generosity of the Annual Conference sponsors, the conference is free for all to attend. Registration is available here. |
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Happy Volunteer Appreciation Month!
We are so appreciative of your unparalleled dedication. You are the hope for the future. You are the difference makers. You are the courageous individuals who step up to change the world. Your immeasurably valuable work is the hope. Thank you, volunteers. We need you, but more importantly, we love you!
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April Schedule for
Patient Support Groups,
Caregiver Support Groups,
and Educational Webinars
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2:00 pm MST, on Thursdays
April 8th - Carisma Therapuetics -- Car Macrophage Study re: HER2 Webinar
April 22nd - QED
April 29th - EMD Serono
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Note: This is a great resource for CholangioConnect Mentors to share with either the newly diagnosed or any new mentees. |
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Each month we will recognize those whose contributions inspire us and who demonstrate excellence in their service to others. This award was created to thank those outstanding individuals and to bring to light the immense efforts, time and resources that are generously given to the Foundation. |
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Nancy volunteers as a Research Advocate with incredible support from her family. |
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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.
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Last chance for the Chicago Marathon |
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LAST CHANCE to join TeamCCF for the Bank of America Chicago Marathon, October 10, 2021. Registration will close on April 23.
All ages and athletic abilities are welcome! We will virtually train together and CCF will help you with your fundraising efforts.
Each runner will receive:
- A welcome packet with a TeamCCF training shirt and awareness bracelets
- Supportive emails throughout your training
- Fundraising Toolkit packed with helpful ideas and fundraising tips
- Private social media pages to communicate with others on the team
- A TeamCCF racing singlet
- 18-week coach-led virtual training
- Meet and greet the weekend of the race for you and one guest
- Fundraising incentives including a TeamCCF visor, sweatshirt, windbreaker
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Moving for the Cure
Save the date for the 2nd Annual Moving for the Cure! Registration will open at the end of April. Sign up as an individual or as a team.
Choose any activity and complete it the week of July 18th.
Each participant will receive a shirt and bib. Don't miss this fun event!
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To learn more about how TeamCCF volunteers are using fitness to raise awareness and critically needed research dollars, visit here. TeamCCF volunteers are not required to be marathon runners, all levels of physical abilities are welcome. |
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15TH ANNIVERSARY HAPPENINGS |
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"What's Your 15?" Challenge |
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In commemorating CCF's 15th anniversary, CCF pauses to reflect on its beginnings, celebrates the growth, and focuses on the need to create improved research in finding a cure. CCF recently introduced year-long activities and goals in honor of its anniversary. In 2021, CCF will work to fundraise an additional $150,000, specifically for research. You are invited to join us by texting CCFturns15 to 41444. CCF has big goals for 2021, together we know it is possible!
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April's Challenge
#CCFturns15
In light of the 15th year anniversary, CCF plans to celebrate while giving back, particularly with the number 15 in mind.
CCF invites you to join the On Your Mark (OYM) giving club this month with a $15/month contribution. Or for those already participating in OYM, consider gifting an additional $15.
To follow and engage in the 15th-anniversary campaign, remember to use and follow #CCFturns15.
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“On Your Mark” was named in memory of Mark Clements, pictured with his family above. Before Mark passed in 2006, his heartfelt desire was to ease the pathway for others experiencing this cancer which in turn led to the creation of CCF.
Watch the video below to learn more about the April challenge.
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The CCF Awareness store has added lots of new items including a car magnet, a 15th-anniversary necklace, emerald crystal earrings, silver or gold bracelets, and the 2021 Conference shirt.
Enjoy 20% off the week of March 28th - April 2nd with the coupon code CCF2021
Buy now for Mother's Day in May or Father's Day in June.
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Look for new items coming mid-April. We will be adding men's and women's tank tops and a TeamCCF green hoodie.
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15th Anniversary Auction Volunteers
CCF is seeking volunteers to help plan two live events and gather donated items for the fundraising auction events scheduled for September/October 2021.
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15th Anniversary Bundle of Hope
Volunteers
CCF is seeking donations for Bundles of Hope. These bundles will be part of an online auction in September. Watch the video for more information and learn how to get involved. Our goal is to have a bundle from every state.
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Volunteer Zoom Meeting
April 26th at 5:00 pm MST
Join us to learn all about volunteer opportunities. With the 15th anniversary commemorations, there are exciting ways to get involved. Hope you can join us. Find the link to join here.
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