- VOLUNTEER OF THE MONTH
- YOU DID IT!
- SUPPORT GROUPS AND WEBINARS
- SCIENTIFIC UPDATE
- TEAMCCF UPDATE
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- 15th ANNIVERSARY HAPPENINGS
- AWARENESS STORE
- VOLUNTEER OPPORTUNITIES
- UPCOMING EVENTS
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Each month, we recognize those whose contributions inspire us and who demonstrate excellence with their service to others. We thank those outstanding individuals and honor their immense efforts, time, and resources that are generously given to the Foundation. |
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Kelley enjoys watching football and loves to spend time with her familly. |
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Kelley Giles was born and raised in Utah. She grew up with two sisters and a brother. Kelley now has four children of her own and six grandchildren. She cherishes time with her family and feels blessed to have them all relatively close to home, so she can enjoy lots of “grandkid days.”
She certainly keeps busy with her love of family, church service, organizing, and genealogy work. As a young adult, Kelley served a mission for The Church of Jesus Christ of Latter-day Saints in the Dominican Republic. Serving there definitely sparked a love of the Spanish language. She went on to earn a bachelor’s degree in education and taught Spanish immersion for three years.
It was Kelley’s brother, Mark, who wanted to create a foundation to serve other cholangiocarcinoma patients and families. When Mark became ill after running a marathon in St. George, UT, the extended family all jumped in for support. A cholangiocarcinoma diagnosis was shocking, especially at Mark’s young age and with excellent health. Mark welcomed another child, just six months after his CCA diagnosis, and Kelley was there to help with the newborn and care for both Mark and his wife Marianne. She has been involved with the foundation since its inception.
With a unique perspective of the last 15 years, Kelley shares that her extended family really rallied to contribute to the effort of learning all they could to support Mark but felt a strong desire to share with others on a similar journey. Her dad was a fundraiser and familiar with creating a Board of Directors. Brothers-in-law, nephews, and other family members shared their skills over the years to support the beginnings of the Foundation. Kelley is amazed at the growth and success over the last 15 years. She recognizes that her sister, Stacie Lindsey, has an extraordinary amount of dedication to finding answers that didn’t exist before. She knows Mark and her family could have benefitted from talking with other patients early on, but nothing existed back then. With Stacie’s drive, Kelley feels so many people have been helped.
Stacie adds, “Kelley has been a solid CCF volunteer from day one from entering data into the database to offering to help bake hundreds of cookies for the conference. She co-led the 15th-anniversary committee. She is detail-oriented, creative, and supportive by nature.” Kelley was the co-chair of the 15th-anniversary volunteer committee and fully supported the charge of raising $150,000 additional dollars for research to commemorate the milestone. Kelley took on key responsibilities for the anniversary’s kick-off webinar, communications for the “What’s Your 15?” Challenge, Journey of Hope send-offs, promotional videos for the fundraisers, sponsored donations for CCF Bidding for the Cure, and packed 550 attendee boxes for the 2021 Annual Conference. It is a great honor and privilege to recognize Kelley Giles as Volunteer of the Month.
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Congratulations, TeamCCF! |
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November Schedule for
Patient Support Groups,
Caregiver Support Groups,
and Educational Webinars
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2:00 p.m. MST, on Thursdays
November 11th- Dr. Skye Mayo, Hepatic Arterial Infusion (HAI) Pump
November 25th- No webinar
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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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SCIENTIFIC AND ADVOCACY UPDATES |
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Dr. Reham Abdel-Wahab
Director of Research and Chief Scientific Officer
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Futibatinib, a highly selective irreversible FGFR1–4 inhibitor, was evaluated in a large basket phase I trial. Between July 2014 and May 2019, the authors enrolled 197 patients from eight countries with advanced solid tumors, including 64 cholangiocarcinoma patients. |
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Patients were heavily pretreated with 75.3% of them receiving two or more prior regimens and 27.1% of patients receiving at least four prior regimens. Thirty-three patients (19.4%), including 22 with intrahepatic CCA, had previously received other FGFR inhibitors.
The authors explored that the recommended phase II dose of futibatinib is 20 mg QD.
The highest response rate was observed in intrahepatic cholangiocarcinoma patients who have FGFR2 fusion/rearrangement. Out of 64 patients, 25.4% of patients achieved complete or partial tumor response to therapy. Some patients who progressed on a prior FGFR inhibitor also experienced responses with futibatinib.
The most common treatment-emergent reported adverse events were hyperphosphatemia (81.2%), diarrhea (33.5%), and nausea (30.4%).
These promising results underscore the importance of ongoing futibatinib phase II/III trials.
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What an amazing weekend for TeamCCF. The Bank of America Chicago Marathon took place Sunday, Oct. 10th and TeamCCF had 12 runners participate. The unusually warm weather did not deter this group as they lined up in the early hours at Grant Park to complete their 26.2 miles. Each had their reason to run and fundraise for the Foundation. Some have a loved one battling cancer and some run in memory of one. Together, the runners raised over $77,000! This is the largest amount ever raised by the Chicago team. Registration is now open for 2022. If you would like to join TeamCCF in running the BOA Chicago Marathon, email meredith@cholangiocarcinoma.org for more information.
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15TH ANNIVERSARY HAPPENINGS |
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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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CCF recently concluded its first ever virtual auction! We are pleased to report that over $26k in items/experiences were donated, and over $27k was raised - thanks to the generosity of our community! |
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Exclusive Holiday Ornament |
The Tree of Enchantment Collection is Kitras Art Glass’ signature creation. Like trees in a forest, no two are alike. With glass “leaves” cascading across the top of the orb and “trunk” webbing pulled through the interior from bottom to top, the Tree of Wellbeing is a magnificent, eye-catching piece, with an approximate 2 1/2" diameter.
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Patient and Caregiver Mentors |
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CCF is seeking additional patient and caregiver mentors for the CholangioConnect program. This work is 100% remote and the time commitment is very flexible. With the launch of a new program to connect with the newly diagnosed, CCF has seen a dramatic rise in requests for mentors.
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Research Advocates
CCF is seeking research advocate volunteers as there are several new projects relating to the review of clinical trial materials. Currently, there are more projects than volunteers available to support this important work. The work of advocates is 100% remote.
Additionally in November, CCF will launch a new and updated advocacy training program. So for volunteers with an interest in this crucial work, we invite you to get involved now.
Become an asset to the cholangiocarcinoma community and learn a new skill.
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Marketing and Communications Committee |
Seeking volunteers to plan communication strategies for yearly campaigns and press releases. This assignment is a remote task that requires approximately 2-4 hours per month. Email cindy@cholangiocarcinoma.org to volunteer today. |
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Light It Green For CCA Volunteers |
Seeking state/country captain volunteers to support the Light It Green For CCA campaign in February of 2022. Seeking 44 additional state captains, as IL, NH, OH, PA, SC, VA, and Canada have current captains. Visit our website here to learn more about this project or email cindy@cholangiocarcinoma.org to get involved. |
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Fundraising Volunteers
AmazonSmile
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Seeking volunteers to fundraise through AmazonSmiles. When you shop through smile.amazon.com, Amazon donates 0.5% of your eligible purchases, at no cost to you, to your designated non-profit.
See instructions in the video above to raise funds with your very next purchase.
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Shopping for a Cure
Hosted by Barbara Dupont in loving memory of her husband, the event includes a great night of food, music, silent & live auction, and more. Tables of 12 can be reserved. Tickets are $40.
Barbara shares, "Hoping to fund another $50k Research Grant through the Cholangiocarcinoma Foundation. One day there will be a CURE, thanks to so many generous donors and supporters. All in the name of Love to honor my Jacques’ legacy."
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Second Annual
Turkey Trot
TeamCCF is excited to host the second annual virtual Turkey Trot Run/Bike/Walk.
Registration is now open. Sign up as an individual or as a team. Each participant will receive a long-sleeved CCF Turkey Trot shirt, awareness wristband, and race bib. Sign up by November 1st to guarantee your event packet by November 18th. Gobble! Gobble!
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Racing for Hope:
A Marathon A Month During 2022
by Delorean Olstrom
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Why? Why would I run 26.2 miles every month for a year? Well, that's an easy and hard question to answer. The easy answer is that I don't want other families to experience what my family has had for the past two years. The hard part is I feel like my why changes almost daily. |
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