Giving Tuesday 2023

In Honor of #GivingTuesday, join us for Candles for the Cure 2023! Donations Giving is not just about making a donation, it’s about making a difference! A friend of CCF is matching #GivingTuesday/Candles for a Cure 2023 donations up to $25,000! Last year on Giving Tuesday, people came together to raise more than $3.1 billion…

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Like a light in the darkness

Paige Rew with her family Imagine a flickering candle, its light breaking through the darkness, symbolizing hope that continues even in the darkness. That is what has carried me through my journey with cholangiocarcinoma. In May 2018, I received my cancer diagnosis of Stage 4 Intrahepatic Cholangiocarcinoma, and I was afraid. I was not just…

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Bright Spot Network

CCF would like to introduce you to Bright Spot Network as a resource. Bright Spot is focused on helping families through a cancer diagnosis. In October, they are offering support groups applicable to our community. The organization focuses on supporting parents facing a cancer diagnosis while also raising young children. Please note that CCF is…

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Summer 2023 Community Fundraiser Highlights

This summer, CCF community members across the country united their friends, family, and neighbors through a variety of unique and successful Community Fundraising events benefiting the Cholangiocarcinoma Foundation’s research and patient services programs. Thank you to everyone who planned a fundraiser, attended an event, or donated in support of a friend or family member’s fundraiser.…

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Scientific Update – Radiation-releasing “seeds” may slow cholangiocarcinoma growth by inhibiting VEGFR2 singling

External radiation has been used to treat cancer for many years, but recent technological advances have led to a new form of radiation from implanted iodine 125 (125I) “seeds.” This new approach is advantageous since it allows high doses of targeted radiation with minimal damage to surrounding tissues while being more convenient for patients than…

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CCF Community Fundraisers Spring 2023 Highlights

Spring of 2023 saw a variety of unique and successful Community Fundraising events benefiting the Cholangiocarcinoma Foundation’s research and patient services programs. CCF is grateful for the time, talent, and effort of each member of the CCF community that organized an event and for all of the neighbors, family members, and friends who supported their…

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🤚🏻 Five for Friday – Five ASCO 2023 Highlights

The American Society of Clinical Oncology (ASCO) meeting took place in Chicago the first week of June. The Foundation provided an information booth in the Advocacy Pavillion and participated in premier scientific events for oncology professionals, patient advocates, industry representatives, and major worldwide media outlets.

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An Inspiring Visit To California

Along with hundreds of family and friends (many of them talented musicians), I recently had the privilege to participate in cholangiocarcinoma (CCA) Warrior, Tom Leitzke’s, Celebration of Life in Santa Cruz, CA. As the graphic image noted on the T-shirts worn by many at the event, Tom was an Artist, Musician, Creator, Husband, Father, Gramps,…

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Patty Maxin’s CholangioConnect Experience

As I reflect upon the inception of CholangioConnect, a myriad of emotions flood my being.  Unequivocally, I recognize that being a part of this vision has been one of the highlights of my life. I am overwhelmed with gratitude in having had the opportunity to christen a program that has so beautifully supported the cholangiocarcinoma…

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Scientific Update – Circular RNA (circZNF215) in cholangiocarcinoma: A new possible therapeutic target

About 98% of the human genome is non-coding, meaning it does not contain the genetic code to make proteins. However, these non-coding regions are not “junk DNA.” Instead, they contain important regulatory elements that can affect gene expression, protein levels, and protein activity. One type of non-coding element is circular RNAs, and a recent study…

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To the “City of Light” then on to “In The Middle Of It All” and “A New Day Every Day”

Wow, talk about a gratifying and full couple of days! As a volunteer for the Cholangiocarcinoma Foundation (CCF), it was an honor to recently participate in two events that are helping others affected by cholangiocarcinoma (CCA). The first was the Cholangiocarcinoma Mini-Symposium, hosted by Buffalo, NY’s Roswell Park Comprehensive Cancer Center and CCF. The following…

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CCF Celebrates National Cancer Survivors Day – 2023

CCF aligns with the National Cancer Survivors Day Foundation’s definition of a survivor as anyone living with a history of cancer – from the moment of diagnosis through the rest of life. Who is a cancer survivor?  CCF aligns with the National Cancer Survivors Day Foundation’s definition of a survivor as anyone living with a history of…

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Monthly Scientific Update – May 2023

APOBEC3-Mediated Mutagenesis in Cholangiocarcinoma Many enzymes are involved in the immune response to viruses and APOBEC3s are a class of those enzymes. APOBEC3s are expressed in cells as soon as a virus enters the body and they help eliminate it by damaging its genome. However, APOBEC3s can also act on host cell DNA, leaving it…

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🤚🏻 Five for Friday – 5 Annual Conference Recordings to Watch

Home / Blog / 🤚🏻 Five for Friday – 5 Annual Conference Recordings to Watch The 10th Annual Cholangiocarcinoma Foundation Conference was a tremendous success! With 500 in-person and 500 virtual attendees, we built on existing collaboration and forged new partnerships. As always, hope and new friendships were abundant. The conference session recordings are now available on…

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Celebrating Jan Meyer’s Delaware Governor’s Outstanding Volunteer Service Award

In this last week of National Volunteer Month, we celebrate Jan Meyer – an exceptional individual who is being recognized for her remarkable contributions to her community and beyond. Jan was presented the Delaware Governor’s Outstanding Volunteer Service Award. Administered by the State Office of Volunteerism, the award honors individuals and groups in Delaware who…

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🤚🏻 Five (+2) for Friday – 7 Upcoming Community Fundraisers

Home / Blog / 🤚🏻 Five (+2) for Friday – 7 Upcoming Community Fundraisers Spring is an excellent time to support the Cholangiocarcinoma Foundation, get involved in your community, and have fun! There are a variety of upcoming Community Fundraising events that offer unique and entertaining ways to get involved and support the cholangiocarcinoma community.…

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3rd Annual Cholangiocarcinoma Foundation Poster Abstract Awards

Three winners awarded for making significant contributions to research for rare cancer known as cholangiocarcinoma The Cholangiocarcinoma Foundation announced the 2023 Poster Abstract Awards at its annual conference that took place virtually and in person in Salt Lake City April 12-14. The Foundation had 62 abstracts submitted with three selected for oral poster presentations. All…

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$500,000 in research grants awarded by the Cholangiocarcinoma Foundation

$500,000 in research grants awarded by the Cholangiocarcinoma Foundation Research grants were made to support early-career, innovative researchers worldwide who are focused on studying cholangiocarcinoma at renowned institutions The Cholangiocarcinoma Foundation, a nonprofit organization funding novel research for bile duct cancer, has awarded the ninth cycle of funding for its Research Fellowship Program. Ten early-career…

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2023 Mark R. Clements Award announced at the 10th Annual Cholangiocarcinoma Foundation Conference

Award winners are honored for making significant contributions toward finding a cure for cholangiocarcinoma through advocacy, vision, innovation, and collaboration. The Cholangiocarcinoma Foundation announced its 2023 Mark R. Clements Award honorees at its annual Salt Lake City, Utah conference. The award winners were honored for significantly supporting patients and rendering cholangiocarcinoma (CCA) a treatable disease.…

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Monthly Scientific Update – April 2023

Radiomics Models May Help Identify Candidates for Surgery Most cholangiocarcinoma tumors are unfortunately detected at advanced stages, but surgical resection is sometimes possible for earlier-stage cancers. To better identify patients who may benefit from surgery, researchers are working to develop ways to predict postoperative disease recurrence. A recent study thus identified variables associated with post-surgical…

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10th Annual Cholangiocarcinoma Foundation Conference features expert speakers from around the world

Mark R. Clements awards to be bestowed to four individuals at the conference, April. 12-14th SALT LAKE CITY, UT – The 10th Annual Cholangiocarcinoma Foundation Conference begins on Wednesday, April 12th, and takes place at the Salt Palace Convention Center. The three-day conference is presented by the nonprofit Cholangiocarcinoma Foundation and is also offered virtually.…

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Cholangiocarcinoma Awareness Month Highlights 2023

Awareness Month 2023 was the most impactful yet! Thank you to all who participated in Cholangiocarcinoma Awareness Month this past February! You spread awareness, hope, support, and love. Here is a glimpse of some of the results we saw: Fun Facts Light it Green requests submitted in all 50 states and at least four additional…

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🤚🏻 Five for Friday – 5 Nutrition Resources

Home / Blog / 🤚🏻 Five for Friday – 5 Nutrition Resources Happy National Nutrition Month! “As a cholangiocarcinoma cancer patient myself, I know how curious and eager our patients are to learn about nutrition in relation to disease and treatments. I am committed to helping newly diagnosed patients get the information they need to…

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CCF CARE Teams 2023: Greetings From The Volunteer State

Have you ever wondered how Tennessee became known as the “Volunteer State”? Well, it goes back to the War of 1812 and then again during the Mexican-American War of 1846, when so many Tennessee militiamen stepped forward as volunteers to support the country’s call to serve. The state has had a number of interesting nicknames…

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Monthly Scientific Update – March 2023

Asbestos and Cholangiocarcinoma: A Pilot Study Kelly Butler Asbestos is a mineral-derived carcinogen linked to multiple human cancers. Although asbestos has been removed from thousands of commonly used consumer products, occupational and environmental exposures are still important cancer risk factors. A recent study thus sought to understand better whether asbestos is linked to cholangiocarcinoma. Forty…

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🤚🏻 Five for Friday – 5 TeamCCF Stories

Home / Blog / 🤚🏻 Five for Friday – 5 TeamCCF Stories TeamCCF began in 2016 as a way to raise money through athletic events for the Cholangiocarcinoma Foundation. Bibs for this year’s 2023 Bank of America Chicago Marathon are available now. Hear five stories from community members and learn more about why they decided…

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🤚🏻 Five for Friday – 5 takeaways from GI ASCO 2023

Home / Blog / 🤚🏻 Five for Friday – 5 takeaways from GI ASCO 2023 The American Society of Clinical Oncology Gastrointestinal Cancers Symposium The American Society of Clinical Oncology Gastrointestinal Cancers Symposium (GI ASCO) is an annual global symposium that delivers the latest and most innovative science, research, and multidisciplinary educational content in the…

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🤚🏻 Five for Friday – 5 Awareness Month Testimonials

Home / Blog / 🤚🏻 Five for Friday – 5 Awareness Month Testimonials Thank you to all who have supported Cholangiocarcinoma Awareness Month so far. Yesterday, February 16th, was World Cholangiocarcinoma Day. There were several green lights around the globe in support of #GREENforCCA. Please enjoy stories from five members of the cholangiocarcinoma community on why…

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🤚🏻 Five for Friday – Social Media

Home / Blog / 🤚🏻 Five for Friday – Social Media February is Cholangiocarcinoma Awareness Month. Please be sure to like, comment and share CCF’s posts to keep us popping up in your newsfeeds throughout February. Each day CCF will share your CCA stories, important facts, news and ways our community is spreading awareness. Here…

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Monthly Scientific Update – February 2023

LCK Inhibitor: A Novel Potential Therapy for Cholangiocarcinoma A variety of signaling pathways can become overactive in cancer to promote cell growth. One of these pathways is known as the Hippo signaling pathway, which involves the activation of “yes-associated protein” (YAP). YAP is regulated by another protein called LCK, which can turn on YAP through…

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Cholangiocarcinoma Awareness Month

February is Cholangiocarcinoma Awareness Month. The Cholangiocarcinoma Foundation (CCF) invites the community to help educate the public about bile duct cancer and raise much-needed funding for patient education, support, and research. You can assist us in spreading awareness of cholangiocarcinoma this February. In February of 2022, 16 official proclamations were declared, and more than 150…

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🤚🏻 Five for Friday – Newly Diagnosed/New to CCF

Home / Blog / 🤚🏻 Five for Friday – Newly Diagnosed/New to CCF If you or a loved one have been diagnosed with cholangiocarcinoma, the Foundation created the Newly Diagnosed/New to CCF program to help patients and caregivers navigate this disease and to assure you that you are not alone. This week we’d like to highlight five…

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🤚🏻 Five for Friday – January is National Mentoring Month

Home / Blog / 🤚🏻 Five for Friday – January is National Mentoring Month The Foundation hopes you are having a Happy New Year! January is National Mentoring Month, and we would like to honor the mentors who serve as volunteers and thank them for their service. Here are five CholangioConnect stories from mentors and mentees. Fred…

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🤚🏻 Five for Friday – Happy Holidays

Home / Blog / 🤚🏻 Five for Friday – Happy Holidays As 2022 comes to a close, the Foundation celebrates the significant progress this year brought us. After accepting poor outcomes for far too long, the Foundation welcomed a new standard of care – the first in the last decade. The Durvalumab approval is a…

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🤚🏻 Five for Friday – Share Gratitude and Give Back

Home / Blog / 🤚🏻 Five for Friday – Share Gratitude and Give Back As the holiday season approaches, we invite you to look for ways to show gratitude and give back to the CCF community. Here are five opportunities you may consider: Keep a gratitude journal Learn about how expressing gratitude makes you happier…

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🤚🏻 Five for Friday – Candles for the Cure 2022

Home / Blog / 🤚🏻 Five for Friday – Candles for the Cure 2022 The tradition continues with 2022 Candles for the Cure. This holiday season, Cholangiocarcinoma Foundation invites everyone to take part in our annual year-end holiday campaign called #CandlesForTheCure by lighting a virtual candle in honor or memory of friends or family who have…

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🤚🏻 Five for Friday – 5 Ways to Give

Home / Blog / 🤚🏻 Five for Friday – 5 Ways to Give As 2022 comes to a close, there are a number of opportunities to support the Foundation. Your year-end giving makes an impact in the lives of those we serve. This week, we’d like to share five impactful ways you can make a year-end…

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Learning to say goodbye

For me, the most challenging part of cholangiocarcinoma was not all the chemo and disruption but dealing with my mortality. When I was diagnosed in November 2021, I asked my doctor about the prognosis. He said I had six months to 2 years to live. Those words still echo in my mind and feed the…

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🤚🏻 Five for Friday – National Children’s Grief Awareness Day

Home / Blog / 🤚🏻 Five for Friday – National Children’s Grief Awareness Day Yesterday, November 17, was National Children’s Grief Awareness Day. The Cholangiocarcinoma Foundation recognizes the children of many of our patients who may also be experiencing a wide range of emotions due to their family member’s diagnosis. Click these links to learn…

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Giving Tuesday 2022

Thank you to everyone that participated in Giving Tuesday 2022! Donations Last year on Giving Tuesday, people came together to raise more than $2.7 billion to support the causes they care about. This year, you can participate in #GivingTuesday by sharing a UNselfie, which tells the world why it’s important to give and support CCF.…

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🤚🏻 Five for Friday – Five Caregiver Perspectives

Home / Blog / 🤚🏻 Five for Friday – Five Caregiver Perspectives November is National Family Caregiver Month (NFCM)! The Cholangiocarcinoma Foundation recognizes NFCM as a time to celebrate the contributions of caregivers. We are pleased to share five Caregiver stories this week: Caregiver Perspective – Jill Neubauer Caregiver Perspective – Laura Lee Caregiver Perspective…

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CCF’s Discussion Board

Dear Friends, On October 12, 2005, my brother was diagnosed with cholangiocarcinoma. Thus began a journey I could not have foreseen. I was a stay-at-home mom with five young, busy children. I volunteered at school, church, and in our community. Immediately after Mark shared his diagnosis with our family, I began searching Google, reading publications,…

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Monthly Scientific Update – November 2022 (A recent study investigated the effects of PD-L1 expression on cancer cells and tumor-infiltrating immune cells in intrahepatic cholangiocarcinoma (CCA))

PD-L1 on Tumor-Infiltrating Immune Cells: A Potential Prognostic Biomarker for Cholangiocarcinoma Kelly Butler, Dr. Reham Abdel-Wahab Patients may develop cancer when some organ cells acquire mutations that allow rapid and uncontrolled cell proliferation. To survive and spread beyond the initial tumor site, cancer cells must stop the body’s immune system from identifying the cells as…

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Patient Engagement and Cancer Genome Sequencing (PE-CGS) “Cancer Moonshot” Program

The research team at Washington University School of Medicine and the Alvin J. Siteman Cancer Center is partnering with the Cholangiocarcinoma Foundation to launch the National Cancer Institute-funded Patient Engagement and Cancer Genome Sequencing (PE-CGS) “Cancer Moonshot” program. This program provides an opportunity for cholangiocarcinoma patients, their caregivers, and advocates to participate in this research…

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🤚🏻 Five for Friday – Meet Five CCA Physicians

Home / Blog / 🤚🏻 Five for Friday – Meet Five CCA Physicians The Cholangiocarcinoma Foundation realizes that the fastest way to advance research is by working together. As the leading advocate for patients, the Foundation is uniquely positioned to bring together world-renowned clinicians, researchers, and physicians to achieve a common goal: finding a cure.…

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🤚🏻 Five for Friday – Meet 5 CCA Scientists

Home / Blog / 🤚🏻 Five for Friday – Meet 5 CCA Scientists Finding a cure for a disease as rare and complex as cholangiocarcinoma demands creative solutions. When clinicians, scientists, and researchers collaborate, their experience and knowledge advance research. Meet five cholangiocarcinoma scientists: Sumera I. Ilyas, M.B.B.S. Lewis Roberts, Ph.D Lipika Goyal, M.D. Juan…

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Cure Cholangiocarcinoma Think Tank (C2T2)

The Cholangiocarcinoma Foundation has published a white paper from the first Cure Cholangiocarcinoma Think Tank (C2T2 ) meeting, which gathered 29 expert scientists and clinicians from the world’s leading academic institutions The multi-disciplinary group was led by Dr. Mitesh Borad and Dr. Nilo Azad, chairs of the International Cholangiocarcinoma Research Network (ICRN). Topics selected for…

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🤚🏻 Five for Friday – Meet Some of CCF’s Valued Experts

Home / Blog / 🤚🏻 Five for Friday – Meet Some of CCF’s Valued Experts Collaboration is essential for cholangiocarcinoma research. This month, join us in appreciating our medical professionals. We are recognizing them each week this month. Here are six of those valued experts: Scientific & Medical Advisory Board (SMAB) R. Kate (Katie) Kelley…

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Living with #CCAHope

At the 9th Annual Cholangiocarcinoma Foundation Conference, the communications team introduced a new social media campaign, “Living with #CCAHope.” CCF has been sharing stories of hope from the entire cholangiocarcinoma (CCA) community throughout the year and will continue to do so throughout 2023. Since the announcement of this campaign, several individuals have shared how they…

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Happy Thanksgiving Canada

Dear Friend, Last Canadian Thanksgiving, I enjoyed dinner with my family. It was a small gathering of my husband, mom, brother, and two adopted dogs. It was everyone I loved dearly. My dad wasn’t there as he passed away in May 2020. He was diagnosed with cholangiocarcinoma a few months before his death. He had…

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🤚🏻 Five for Friday – 6 CCF Accomplished Medical Professionals

Home / Blog / 🤚🏻 Five for Friday – 6 CCF Accomplished Medical Professionals CCF collaborates with many physicians, clinicians, and researchers whose accomplishments in the cholangiocarcinoma field have significantly contributed to the organization. This week, we are proud to introduce you to six professionals, alphabetically by last name: Dr. Mitesh Borad ICRN Chair Dr.…

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Man runs a marathon each month in honor of his wife, who has been diagnosed with rare bile duct cancer twice

Delorean Ostrom’s ‘Racing for Hope’ campaign raises funds to advance cholangiocarcinoma research with proceeds benefiting the Cholangiocarcinoma Foundation SALT LAKE CITY, UT – Delorean Ostrom of Suwanee, GA, and his family’s life changed when his wife, Mandy, was diagnosed with a rare bile duct cancer called cholangiocarcinoma. To pay tribute to her, Ostrom is running…

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Monthly Scientific Update – October 2022 (Breath Tests Could Help Diagnose Cholangiocarcinoma: An Innovative Approach to Early Detection)

Kelly Butler, Dr. Reham Abdel-Wahab Cholangiocarcinoma (CCA) is often detected at an advanced stage that is difficult to treat. Early detection is an important area of research, and scientists are working to develop new tools to detect CCA in its early, more treatable stages. A recent paper laid the necessary groundwork for diagnostic breath tests,…

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Racing for Hope Journal Entry 21

When I got this idea to run a marathon a month, I knew it would be hard. I really underestimated the mental side of it. Training for this marathon wasn’t the best. Mandy had a procedure during training time and ended up with an infection. Which was another hospital stay and training time lost. This race…

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Patients, Caregivers Share Why They Participated in ICPR

Cholangiocarcinoma patients are eager to contribute to science and accelerate research because of this newly approved FDA process and share their experience enrolling in the International Cholangiocarcinoma Patient Registry (ICPR). The following testimonials from four patients and one caregiver refer to their experiences enrolling for ICPR and receiving emails/phone calls about the free regisration. Register…

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Collaborative Research Groups

CCF has formed collaborative groups that work to achieve its mission to find a cure and improve the quality of life for cholangiocarcinoma patients. Each of them exemplify the organization’s core values: Patients First Patients First Collaboration Collaboration Innovation Innovation Innovation Urgency Learn more about the five groups that working for you. The Scientific and…

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Racing for Hope Journal Entry 20

Monday, September 12th, 2022 Mandy is having surgery to remove lymph nodes that are of concern. Walking into the hospital is never easy but for me, it has become easier. Getting checked in and even Mandy leaving me in the waiting room has become just routine. Today was different I was going to get to…

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New standard of care for rare cancer with FDA approval of Imfinzi applauded by Cholangiocarcinoma Foundation

AstraZeneca TOPAZ-1 Phase III trial showed adding immunotherapy to standard chemotherapy increases overall survival in advanced biliary tract cancer The Cholangiocarcinoma Foundation (CCF) applauds the U.S. Food and Drug Administration (FDA) approval of AstraZeneca’s Imfinzi (durvalumab). The TOPAZ-1 Phase III trial showed that durvalumab in combination with standard-of-care chemotherapy resulted in improved overall survival (OS)…

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Monthly Scientific Update – September 2022 (Precision Therapeutics for Intrahepatic Cholangiocarcinoma)

Kelly Butler, Dr. Reham Abdel-Wahab The traditional chemotherapies gemcitabine and cisplatin have several side effects and have been used to treat cholangiocarcinoma for decades. However, the field of precision oncology is rapidly advancing and generating new, more targeted treatment options. Every tumor is unique, and precision oncology examines the specific genetic alterations in a patient’s…

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2022 University of Chicago Regional Symposium

2022 University of Chicago Regional Symposium Join us for a day dedicated to the science of cholangiocarcinoma. The symposium includes presentations from University of Chicago clinicians in the field of cholangiocarcinoma. Speakers present highlights from the latest clinical findings, including systemic, IR, and transplant, followed by panel discussions that engage the audience in Q&A. Dr.…

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3rd Annual Moving for the Cure Recap

Thank you to everyone who helped make TeamCCF’s 3rd Annual Moving for the Cure (M4C) a success! Each M4C participant elected to complete any athletic activity of their choosing—such as running, biking, hiking, swimming, yoga, dancing, and more—during the week of July 24-30, 2022. The goal of M4C is to encourage the cholangiocarcinoma community to…

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Racing for Hope Journal Entry 19

So marathon 8 was not a fun run! If you watched my last recap, you know that Mandy’s cancer is back and I hadn’t trained since I ran the July marathon. I started this run at 5:55 am with my Noxgear safety vest turned to green, because it’s my favorite and most hated color! Why…

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Long-Term Survivor Stories – Grace

It started as an itch. Thinking it was just dry skin, I began applying lotion more often. There was no redness or swelling, yet the itching intensified with every passing day. I itched everywhere – my arms, my legs, my hands, my feet, my chest. It would wake me in the middle of the night,…

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Monthly Scientific Update – August 2022 (Preclinical Study Finds that Brusatol may Slow Intrahepatic Cholangiocarcinoma Growth)

Kelly Butler, Dr. Reham Abdel-Wahab Brusatol, a traditionally used Chinese herbal medicine, is currently being explored as a potential cancer treatment in preclinical studies. While the research is still in its early stages,  several studies have found promising results in models of multiple cancer types. A recent laboratory study focused specifically on intrahepatic cholangiocarcinoma (ICC)…

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Trials, Targeted Agents Often Lead to Financial Toxicity From CCA

Clinical trials and targeted agents do not appear to affect health care–related quality of life, however. July 27, 2022 — People with cholangiocarcinoma (CCA) who enroll in a clinical trial or receive targeted therapy suffer a significant financial burden, but their health care–related quality of life (QOL) is unaffected, according to a new report published in Journal of…

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