- VOLUNTEER OF THE MONTH
- YOU DID IT!
- SUPPORT GROUPS
- 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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Kirsten and her late husband, Rick, enjoy a photo. |
Kirsten Gannon loves spending time with family and loves spending time outdoors. When she can combine the two, she is happiest. She resides in Kansas City and enjoys her career as an interior designer working with new construction vacation homes. |
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Kirsten's family loves spending time outdoors. |
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Growing up, Kirsten’s father, an orthopedic oncologist, often brought children to their home to play. Disabilities and disease didn’t feel foreign to her and she loved spending time with the children. Serving, loving, and advocating for the disabled is something she has known her whole life. She volunteered for the National Sports Center for the Disabled and worked on adaptive skiing projects, which eventually led to a seasonal staff position. She has also founded her own nonprofit, Access Sport and Health Adventures Foundation, which affords disabled children and their families a variety of outdoor experiences.
Kirsten is a mother of four. She has dealt with an incredible amount of loss in her life. She lost a 10-year-old son to cerebral palsy, a 26-year-old son to sudden cardiac death syndrome, and a husband to cholangiocarcinoma. Despite all the loss, she feels helping people brings her happiness.
Just weeks after a ski trip, her husband, Rick, did not feel well and was quickly diagnosed with blood clots in his legs and lungs. A scan of his lungs caught a glimpse of something suspicious on his liver. Kirsten immediately knew the news would be difficult. With a gift for research, Kirsten went to work. After a cholangiocarcinoma diagnosis, they were prepared to move out of state to get the best treatment possible. The first glimmer of hope came upon meeting with Dr. Nilofer Azad at Johns Hopkins and they talked about possible clinical trials.
Kirsten volunteers as a CholangioConnect mentor. She finds joy in helping others who think there isn’t much they can do or don’t realize where to look for information. She has helped several international mentees. One particular mentee was frustrated by the clinical trial application process, which is commonly tedious and fatiguing, and the leaving of voicemails with no progress. Kirsten encouraged her to call the office every single day until she was able to talk to a real person. Kirsten knew the patient needed to be a participant in that trial. Just recently, she received a text message from her mentee who shared that with that clinical trial participation there has now been tumor shrinkage of 39% and no spread of disease. The mentee added that the patient wouldn’t have been in this clinical trial without Kirsten’s help. Her guidance was critical.
Kirsten shares that research and science have really changed significantly and will continue to change for the better. Every day brings new hope. She volunteers to remind others that they can become the percentage that can beat this disease. She also knows that positive thoughts are essential in moving forward and volunteers to provide the positivity. It is a great honor and privilege to recognize Kirsten as Volunteer of the Month.
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Michelle's Hot Peeps Beat CC participants enjoy the event in Taylor, Texas. |
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August 14th, Michelle's Hot Peeps Beat CC staged the 4th Annual 5K/1K event along the trails in Taylor, Texas, Murphy, and Bull Branch parks. The 2020 event was virtual due to COVID protocols, so everyone was excited to return to an in-person event.
Attendance remained suppressed due to COVID but over 100 participants signed up in ages from six years old all the way to 80+ years! Ninety-five percent humidity coupled with the early-morning heat made the event challenging for everyone. However, Kona Ice with its incredible snow cones provided a refreshing reward. City of Taylor fire personnel provided onsite EMS, city and county provided race security, and the local Lions Club provided free vision screening for all children.
But it was about the people. Sponsors and businesses who donated funds supporting the race and cholangiocarcinoma research funding. Family and friends came out to race and provide logistical support for the event. Friends who Michelle guided and coached during her 10 years as a health trainer, her "peeps", attended to rekindle friendships, celebrate Michelle's life, and generate funds for the CCF.
Our second most successful event sent more than $12,000 to the CCF to "pay it forward." The Fifth Annual Michelle's Hot Peeps Beat CC is already scheduled for August 13th, 2022. "Live life to the fullest, love always, and laugh at yourself."
-John McDonald, Founder of Michelle's Hot Peeps Beat CC
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"For the survivors standing here with us today, for every person touched by Matt’s story, and for all the families grieving, fighting, and hoping for another day, for another birthday, we won’t back down. I am so proud of our community and all that we’ve been able to accomplish in such a short amount of time. In the past two years, not including personal donations made to the CCF we have raised almost $40,000. More people are sporting our tank tops, turkey trotting, wearing green for CC Awareness Day, and letting the world know that something needs to be done. That the lives of CC patients, and rare cancer patients worldwide, matter.
This past year, we saw the first FDA-approved targeted therapy for cholangiocarcinoma. More are on the horizon. Since the Cholangiocarcinoma Foundation's inception, more and more science, research dollars, and clinical trials are paving the way for progress. We’ve had quite a year here as well. As of this week, we’ve submitted the final documentation for achieving our 501c-3 status and officially becoming a nonprofit. We hope that with this designation, we can continue to grow this event and evolve into an even greater force to reckon with in support of science and the quest for a cure. This is a race against time, friends, and there is a lot more work to be done."
-Christina Sgambato, Founder of A Matter of Hope
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October Schedule for
Patient Support Groups,
Caregiver Support Groups,
and Educational Webinars
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2:00 p.m. MST, on Thursdays
October 14- TBD
October 28- Tempus
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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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Recently, a group of researchers from George Washington University, Mayo Clinic, Virginia Commonwealth University School of Medicine, and Imperial College London at the United Kingdom, James Cook University at Australia, Singapore National Cancer Institute, and Khon Kaen |
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University in Thailand collaborated with the Cholangiocarcinoma Foundation Director of Advocacy and published an article at Nature Review. The authors summarized the cholangiocarcinoma natural history. They focused on the new discoveries in the disease risk factors, including variations between liver fluke and none-liver fluke-related cholangiocarcinoma and the controversy between different cholangiocarcinoma subtypes. Also, they clarified the updated cholangiocarcinoma screening, diagnosis, treatment approaches, and their effect on the quality of life.
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TeamCCF is gearing up for the Bank of America Chicago Marathon on Sunday, October 10th, and the New York Marathon, Sunday, November 7th. The runners will train for 18 weeks and have committed to raise money for the Foundation. Together, they have raised over $88,000! View their fundraising pages at TeamCCF.org.
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TeamCCF also has several volunteers who have signed up for a race in their hometown and are fundraising on their own. Good luck this month to Lindsay Silveus and Steve Henry who will run the Denver Colfax Half Marathon in memory of their mom/wife, Robin, and to Jill McCulley who will run the Canton Fall Classic with friends and family in memory of Jill's mom, Kathy. |
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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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Place a bid and make research happen! |
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Oct. 2nd at 9 p.m. ET!
Don't miss out on some of the fantastic items up for bid, including Tennesse Titans tickets, Notre Dame vs. Navy Football tickets, award-winning skincare, and special vacation experiences to New York, Illinois, South Carolina, Utah, Florida, and more.
There is something for everyone. Every dollar raised goes straight to cholangiocarcinoma research and helps us reach our goal. Visit CCF's Bidding for the Cure today!
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Exclusive Holiday Ornament |
Enjoy this beautiful and unique hand-blown Tree of Wellbeing Christmas Ornament only available during CCF Bidding for the Cure.
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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New to the Awareness Store this month is a TeamCCF Adidas running hat for $22. |
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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 |
CCF Staff is 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 |
CCF Staff is seeking state/country captain volunteers to support the Light It Green For CCA campaign in February of 2022. Seeking participation from all 50 states and support from outside countries. Visit our website here to learn more about this project or email cindy@cholangiocarcinoma.org to get involved. |
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Annual Conference T-shirt Designers |
The 2022 Annual Conference t-shirt logo contest is here! CCF is now accepting logo designs for the conference t-shirts.
This year's logo must include a glow-in-the-dark element as the conference now coincides with the Light It Green For CCA in February. The winning logo is to be printed on the front of a black, short-sleeved t-shirt. Design submissions are due on October 10th.
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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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