- VOLUNTEER OF THE MONTH
- YOU DID IT!
- SUPPORT GROUPS AND WEBINARS
- SCIENTIFIC UPDATE
- TEAMCCF UPDATE
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- SURVIVOR STORY
- AWARENESS STORE
- VOLUNTEER OPPORTUNITIES
- UPCOMING EVENTS
- POLICY REMINDER
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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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Kristen shares time with her dad. |
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Kristen and her family wear green as they support cholangiocarcinoma awareness and the local baseball team. |
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Kristen Hall shares how she truly had an idyllic childhood - growing up in a small town, with a close-knit family that loved her and supported her. Even today, she manages a family-owned and operated business, and is a busy mother of four children. Kristen enjoys travel and baseball, a passion she shares with her father. More than four years ago, she also became a caregiver to her dad as he was diagnosed with cholangiocarcinoma.
Kristen remembers the first day cholangiocarcinoma (CCA) was spoken about in the doctor’s office. She wondered how she could have never before heard of something that could come into a family’s life so unknowingly and unexpectedly, yet change lives so completely. She shares, “how could it take away all your stability overnight?” Kristen had to learn more. Locally, her father was offered palliative chemo, and an oncologist appointment with a two-week wait. Kristen set immediate efforts in motion, after research on the Foundation’s website, which led her to call Memorial Sloan Kettering for an appointment. Within four days, the family went from hearing the words “non-operable” and “not much to be done” to “this is how we are going to treat this” and “we will take good care of you” as they sat with a team of doctors experienced in CCA treatment plans. That was a pivotal moment for Kristen. She recognized that other families had come before hers and now they didn’t have to start at ground zero. With that in mind, Kristen began to pay it forward.
Kristen quickly learned of another man in her small hometown that was also diagnosed with CCA. He was the local high school baseball coach. Kristen’s dad had been a lifelong baseball coach too. She and her dad wanted to support him, through their shared love of baseball, in any way they could. The Palmyra High School baseball team was soon selling cholangiocarcinoma t-shirts as a fundraiser and turned their team colors green for a day, in honor of their beloved coach, thanks to Kristen’s involvement. As an advocate and fundraising volunteer, she knows dollars raised equal research. And research means there might be a new club in a golf bag of options for attack. Kristen wholeheartedly believes that awareness creates change. She knew Coach Good nearly two years before he passed yet has continued efforts, with the support of the community, to plant a tree in his memory at the ball field. As an emotional tribute, she also watched baseball players read aloud essays submitted for scholarships awarded in honor of their late coach. Kristen feels the connection has left a beautiful legacy and inspired community awareness, connection, and support. Goodness has come from something so difficult.
Kristen has worked on multiple local awareness events, supported CCF’s discussion boards, created video content for social media, and has been a key supporter of the Light it Green for CCA campaign. She received several calls and emails following February’s campaign, as people saw the family business fully lit green and decorated with large banners about CCA. She knew others walking this journey now felt they were not alone. Kristen has already begun planning additional green flamingo flockings to add to February's upcoming awareness month activities. It is a great honor and privilege to recognize Kristen Hall as Volunteer of the Month.
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Congratulations, Turkey Trotters! |
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With more than 500 participants, TeamCCF raised nearly $95,000 with a $10,000 match, volunteer support, and sponsorships! Congratulations to all!
Special thanks to the following teams and individuals who contributed in excess of $2,000 during the Turkey Trot campaign: Bader's Battalion, L18 Strong, Lydia Ra, Nirma Patel, Radar's Platoon, Sharon's Squad, Team Anne, Team Fajardo, Team KK, Team Lee, and Warriors and Warriors Families vs Cholangio!
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Congratulations to Katie Moore, this year's winner of the 9th Annual Cholangiocarcinoma Foundation Conference t-shirt Design Contest.
Thank you to all contest participants who submitted their designs and to those who voted on finalist designs on social media. T-shirt sales are now open with conference registration.
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Point of Light Award Recipient
Robin McCallister
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Congratulations to Research Advocate, Robin McCallister! She was awarded the Daily Point of Light Award - an award that honors those that change the world.
Read about Robin's contributions below.
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Daniel King Memorial Fund Event
For the past 4 years, friends of Dan King have gathered for his birthday, October 10, 2021, to raise money for the Cholangiocarcinoma Foundation in his honor.
This October, an amazing $9,000 was raised. In total, the Daniel King Memorial Fund has raised over $26,000.
Daniel King passed away on May 11, 2017, from CCA. Thank you to his friends and family who honor their good friend by helping those dealing with cholangiocarcinoma.
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Teresa Delcorso OpEd
Rare cancer diagnosis for WTC responders, survivors 20 years later
Teresa Delcorso-Ellmann is a member of the Cholangiocarcinoma Foundation Board of Directors and an Assistant Dean at Rutgers, the State University of New Jersey; her late husband Stephen Ellmann was the Martin Professor of Law at New York Law School, the biographer of the South African Jurist Arthur Chaskalson and wrote about his journey with cholangiocarcinoma in his blog, Now without Hesitation.
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December Schedule for
Patient Support Groups,
Caregiver Support Groups,
and Educational Webinars
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2:00 p.m. MST, on Thursdays
December 9th- TBD
December 23rd- No webinar
December 30th- 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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Recently a group of ICRN researchers evaluated the impact of using Image-Guided Percutaneous Ablation for Intrahepatic Cholangiocarcinoma and the association between tumor molecular profiling and the treatment response. |
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This is a Multi-Institutional study that was presented at the 2021 Society of Interventional Radiology Annual Meeting.
- Between 2007 till 2019, 46 intrahepatic cholangiocarcinoma patients were diagnosed and treated with Image-Guided Percutaneous Ablation was enrolled.
- 69 intrahepatic cholangiocarcinoma lesions were treated with Image-Guided Percutaneous Ablation. Among those, 53 lesions were local therapy treatment-naïve
- Median tumor diameter was 1.6 cm (range, 0.5-5.1 cm).
- Among 46 patients
- 3-year local tumor progression-free survival was 71.5%
- Mean intra-hepatic progression-free survival was 15.6 months
- Mean overall survival was 47.1 months
- Liver abscess was the main procedure complication with no reported deaths.
- Only 18 patients had tumor molecular profiling results. Among those 13 patients (72%) had genetic alterations in their molecular profiling report.
- 6 patients had poor-prognosis mutations, including CDKN2A, ARID1A, and MSH2. Among those patients
- 3-year local tumor progression-free survival was 66.7%
- Mean intra-hepatic progression-free survival was 9.8 months
- Mean overall survival was 28.8 months
In conclusion, Image-Guided Percutaneous Ablation is an effective loco-regional treatment approach for small-localized ICC even among those with poor prognosis genetic alterations. More extensive larger cohort studies are warranted to evaluate the association between mutational profile and efficacy of liver-directed therapies.
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Brendon Widau (left) and friend, Chris Jones, finish the Indianapolis Marathon. |
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Brendon Widau (second from left) and friends celebrate. |
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TeamCCF had a busy November. Volunteer fundraiser, Brendon Widau, ran the Indianapolis Monumental Marathon in honor of his dad, John Widau. Brendon was able to raise an incredible $5,451.72. Thank you and congratulations, Brendon! |
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Seven runners completed 26.2 miles on Sun., Nov. 7th in the TCS New York City Marathon. Together the team raised $52,273.03! What an incredible weekend! Thank you!! |
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Hello. My name is Bekki.
I am a 40-year-old mother of two children, Grace, 9, and Connor, 7. I am incredibly lucky to be married to my best friend and love of my life, Jason, who is the pillar of our family. We live on the Central Coast of California (between Los Angeles and San Francisco) on a little 5-acre ranch that we recently purchased - in the middle of a pandemic, with stage 4 cholangiocarcinoma, while traveling to be on a trial, and waiting on the transplant list in Chicago, IL. It’s crazy how life just keeps plugging along no matter your diagnosis or challenges.
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2021 Cholangiocarcinoma Foundation Ornament |
The demand for the 2021 CCF Christmas Ornament has been incredible! We will restock the week of December 6th. Make sure to get your ornament and holiday gifts at the Awareness Shop. Remember, all proceeds support CCF programs and services. |
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Become a state captain 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 are currently assigned. |
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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.
Fundraise with your next purchase in just a few clicks!
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Become a Patient or Caregiver Mentor with the CholangioConnect program. Mentors create personal connections that enable one-on-one support. |
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Light it Green For CCA Walk
Wed., Feb. 23rd
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Light it Green for CCA Walk is an evening demonstration in downtown Salt Lake City to commemorate awareness month during the upcoming annual conference. Register for the walk within the annual conference registration. |
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CCF has spent 15 years creating its brand and wants to maintain its integrity. Please help us do that by adhering to copyright law, which applies to nearly every piece of content created at CCF, from our website to our social media posts. We display proper—and prominent—copyright notice on our website and any other content we produce, including Facebook frames. |
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Logo Usage and
Permissions
Alterations to approved Facebook frames are an infringement on copyright (including the addition of the skeleton hand with the green ribbon around the middle finger).
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