- YOU DID IT!
- ADVOCACY UPDATE
- VOLUNTEER OF THE MONTH
- TEAMCCF UPDATE
- CCF AWARENESS STORE
- VOLUNTEER TRAINING AND NEEDS
- UPCOMING EVENTS
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Awareness Month Success!
On World CCA Day we helped spread awareness of cholangiocarcinoma to 106,000 people via CCF's social media platforms alone. With support from CCF's anniversary sponsors, including Taiho Oncology, CCF distributed 1,500 free wristbands, 100+ green light bulbs, and 100+ yards signs this February.
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Buildings and homes were lit green around the globe during February's Light It Green For CC campaign. International efforts included structures lit green in Spain, United Kingdom, and Canada this year. Use #greenforcc to follow the enthusiastic and exceptional movement. Thank you to all those that participated in shining a light on cholangiocarcinoma this year.
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Volunteers in South Carolina worked to turn 75 homes green for the cause, with efforts in North Carolina, Georgia, and Tennessee as well. The billboard below was part of their numerous efforts. |
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Heartfelt thanks to the many volunteers who worked tremendously hard to promote, plan, and share why the Light It Green For CC is a cause they wanted to get behind.
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Thank you to Taiho Oncology for helping us shine a tremendous light on cholangiocarcinoma this year! |
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Make Yourself a Priority
By Dawn Scott, Patient Advocate
On February 1, 2021, CCF and advocates hosted a Kick-Off Event to introduce our #CCFW4L Program, aka CCF’s Wellness for Life: Cholangiocarcinoma Community That Fosters A Healthy Mind & Body. You can view this fun event here. Our first Wellness Wednesday activity on February 3, where we joined Stacie Lindsey in making her famous CCF Green Smoothie! The following Wellness Wednesday (WW) featured CCF’s Director of Industry Development, Isabel Gardett, who led us through a relaxing modified yoga session to strengthen our mind-body connection.
Caitlin Brammer recently presented an insightful and thought-provoking presentation on Uncertainty Management, designed to help make difficult health and wellness decisions during times of overwhelm caused by illness. The last week of February featured Alie Plouff’s insightful discussion on Overall Wellness, encompassing physical, emotional, social, intellectual, spiritual, and environmental. You can find all of the Wellness Wednesday videos posted here, so watch them when you can and truly, take time to make yourself a priority!
Future WW sessions include modified boxing, a cooking lesson, art therapy, meditation/mindfulness practice, gratitude journaling, an “Ask the Organizer” hour where a professional organizer answers your top questions, and so much more! Keep joining us every Wednesday at 5 pm MST/7 pm EST to get your wellness fix, and don’t forget to check out CCF and #CCFW4L social media for Self-Care Sunday tips!
Until our website is live, join us on our Facebook page CCF’s Wellness for Life and our new Instagram page, @ccfwellness4life, to keep the conversation going and show support for your CCF team and post your pictures!
Do you have an idea for a Wellness Wednesday topic? Better yet, would you like to teach a session or know someone that would be interested? Please reach out to me—I’d love to talk with you and learn more! And remember, we at CCF and #CCFW4L warmly welcome you to join us in working together for a better tomorrow, today.
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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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Robin, along side her husband Terry, works as a Research Advocate to promote patient education. |
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A born and raised native of Florida, Robin enjoys reading, learning, walking, and spending time with her two daughters and their families. She certainly enjoys any time with her newest grandbaby, born just last year. Robin earned a Ph.D. in Psychology from Auburn University and practiced as a clinical psychologist, working with children and families for 34 years until her cholangiocarcinoma diagnosis.
In May 2017, Robin halted her career to seek treatment. She now feels lucky to have been offered a surgical resection. Only a couple of months following her surgery, CCF patient advocates informed her of the Annual Conference. Robin attended in 2018 and found it remarkably uplifting. As a lifelong learner and proponent of education, she thoroughly enjoyed learning about the CCF community’s workings, the resources available to better educate patients and caregivers alike, and the hope it all provided. Two volunteers eagerly approached her at the conference, who warmly welcomed her and invited her to serve as a CholangioConnect mentor. Not long after, she also began volunteering as a research advocate.
Robin has worked on numerous projects as a research advocate, including reviewing Young Investigator grant proposals, improving patient surveys, attending educational seminars, and summarizing scientific posters to share the latest science with the community. Additionally, she has served as an Annual Conference volunteer to facilitate patient and industry interactions and problem solving while hosting EPIC round table discussions.
Robin shares that the volunteer community is exceptionally “encouraging, hard-working, and supportive of each other.” She loves the feeling she gets from involving herself and loves those she has had the opportunity to meet. Robin continues, “Knowledge is power” and she hopes to be able to pass that hope along as new knowledge is shared. She has always believed there is strength in numbers and enjoys working as part of a research group that motivates others to be active in their own care. It is an honor and privilege to recognize Robin McCallister as Volunteer of the Month.
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Actively recruiting for the upcoming Chicago Marathon |
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Join TeamCCF for the Bank of America Chicago Marathon, October 10, 2021.
All ages and athletic abilities are welcome! Only a few bibs remain.
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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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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New items are here!
In honor of CCF's 15th anniversary, we have commissioned a local Salt Lake City jeweler to design a limited edition 15th Anniversary necklace. The stunning sterling silver necklace has a chain that adjusts to 16" or 18" with a delicate emerald green crystal and a "15" charm ($45). Newly designed earrings are also available. The earrings are sterling silver with a faceted emerald gemstone drop ($25).
A CCF car magnet measures 5" round and will be a great way to spread awareness on the back of your car ($6). Also, just in time for our virtual conference, the universal stand that can hold a tablet or cell phone is due in the store this week. The stand conveniently sits right on your desktop, tabletop, or kitchen countertop and is great for video calls, reading a recipe, or watching a video ($15). Both items, coming soon!
Don't forget to order your 2021 CCF Conference shirt designed by Matt Reidy. Limited quantities are available. ($20)
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Patient & Caregiver Support Group Moderators
CCF is seeking moderators for the monthly online support groups currently held 1st and 3rd Thursdays at 2 pm MST.
15th Anniversary Auction Volunteers
CCF is seeking volunteers to help plan two live events and gather items for the fundraising auction events scheduled for September/October 2021.
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March Schedule for
Patient Support Groups,
Caregiver Support Groups,
and Educational Webinars
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2:00 pm MST, on Thursdays
March 11th - TBD
March 25th - QED Webinar
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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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March's Challenge
#CCFturns15
In light of the 15th year anniversary, CCF plans to celebrate while giving back, particularly with the number 15 in mind. Watch the video to learn what March's challenge holds and how you can get involved.
Share your ideas and photos with us. We want to see how creative the community can be! Be sure to tag CCF in your challenge photos by using the hashtag #CCFturns15.
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