Posts by Cholangiocarcinoma Foundation
Softball Tournament Promotes Community Spirit and Builds on Special Memories
The second annual Cholangiocarcinoma Awareness Softball Tournament organized by the Bryant Family was held in March 2024 in Colonial Heights, Virginia.
Read MoreWinter 2023-2024 Community Fundraiser Highlights
This winter, our Community Fundraisers created new ways to raise funds for much-needed research and programs and to shine a spotlight on cholangiocarcinoma awareness.
Read MoreScientific Update: Webinar Recap – Immunotherapy Insights for Cholangiocarcinoma
In a recent CCF webinar, Dr. Haley Ellis provided an overview of recent advances in immunotherapy for cholangiocarcinoma.
Read MoreFrom Football to Fine Art – A family finds creative ways to raise funds and awareness
In the summer of 2022, Taylor’s family received devastating news: her dad had been diagnosed with cholangiocarcinoma
Read MoreCholangioConnect in 2023
CholangioConnect had a successful 2023, and we invite you to learn more about the connections made and outreach achieved.
Read MoreAlie Plouff has been honored with the Daily Point of Light Award
CCF is delighted to announce that Alie Plouff has been honored with the Daily Point of Light Award on January 25, 2024. This prestigious award is a testament to her exceptional commitment to addressing the community’s needs with unwavering dedication. Alie’s journey as a caregiver for her mother, who survived cholangiocarcinoma for nearly four years,…
Read MoreNew Year’s Resolution
Welcome to 2024, a year that marks the beginning of a new chapter for all of us at the Cholangiocarcinoma Foundation.
Read MoreJingle for Janet 2023
In 2018, Eric Parker initiated the race as a special tribute to his late wife, Janet.
Read MorePatricia Maxin of Houston recognized for Service to the Rare Cancer Community
Patricia “Patty” Maxin of Houston has been honored with the prestigious Daily Point of Light Award from Points of Light.
Read MoreAutumn 2023 Community Fundraiser Highlights
This fall, CCF members nationwide organized successful fundraisers for the Cholangiocarcinoma Foundation, aiding research and patient services.
Read MoreShine a light of hope for a better tomorrow
As the holiday season envelops us in its warm embrace, I find myself surrounded by the love of my family, cherishing precious moments and creating memories
Read MorePam Schubert Shares Her Story
I have known Pam only a few short months. In that time, we have discovered that we have some powerful life experiences in common.
Read MoreMandy Wallace: An Advocate Abroad
In the realm of cholangiocarcinoma advocacy, Mandy Wallace stands out as a beacon of inspiration and change.
Read MoreGiving 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…
Read MoreLike 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…
Read MoreSummer 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.…
Read MoreCCF 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…
Read MoreScientific Update – Development of a Fluorescence-Based Probe to Facilitate Cholangiocarcinoma Resection and Diagnosis
Some early-stage cholangiocarcinomas can be surgically removed, but detecting microscopic cancer cells remains a significant challenge.
Read MorePatty 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…
Read MoreMonthly 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…
Read MoreCelebrating 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…
Read MoreMonthly 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…
Read MoreCholangiocarcinoma 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…
Read MoreA single arm phase 2 study of Y-90 SIRT in combination with durvalumab (MEDI 4736) and gemcitabine/cisplatin in locally advanced, unresectable or metastatic intrahepatic cholangiocarcinoma
This trial evaluates a combination of interventions (chemotherapy, immunotherapy, and radiation) as a potential new treatment for advanced unresectable and metastatic intrahepatic cholangiocarcinoma. In this study patients will be treated with gemcitabine/cisplatin, durvalumab, and yttrium-90 selective internal radiotherapy.
Read MoreBruce Coppock, Former Vice Chair of the Board of Directors of the Cholangiocarcinoma Foundation, Dies at age 71
Bruce Coppock, Vice Chair of the Board of Directors for the Cholangiocarcinoma Foundation (CCF) and former President and Managing Director of The Saint Paul Chamber Orchestra, died at 71 after a long battle with bile duct cancer.
Read MoreMonthly Scientific Update – December 2022
The Oral Microbiome in Cholangiocarcinoma: A Potential Biomarker that Could Promote Early Detection
Read MoreGiving 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.…
Read MoreCure 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…
Read More🤚🏻 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.…
Read MoreMan 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…
Read MoreMonthly 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,…
Read MorePatients, 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…
Read MoreNew 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)…
Read MoreMonthly Scientific Update – September 2022 (Can bacteria help fight cancer?)
George Riddle, Dr. Reham Abdel-Wahab Bacteria live in our guts – in all of us. Some of them are good; some are not. Some of them help us digest food; some help fight or promote infections; some work for or against cancer and its treatment. Can they help fight cholangiocarcinoma? Perhaps, if we do it…
Read MoreMonthly 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…
Read More2022 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.…
Read MoreMonthly 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)…
Read MorePatricia J. Lehtinen
4/17/1945-7/29/2022 One cannot think about Patricia (Pat, Gam, Mama Lehtinen) without thinking of her love for life and helping others. She always strived to do one act of kindness a day but often did much more. To know her was to love her. Although the pandemic kept her confined more than she wanted, she still…
Read MoreTrials, 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…
Read MoreJulie Staples
Julie Ann Jackola Staples, 37, passed away on Monday, July 18, 2022, at her home. She was born in Durham. Julie was a registered nurse at Duke Hospital for 7 years. She was passionate about her work and had a love for helping people. She was also about to finish her BSN Degree at the…
Read MoreDavid Howard
My father Dave passed on July 11, 2022, after a 2-year battle with cholangiocarcinoma. He remained strong and courageous throughout his many treatment visits. The first thing he did after his diagnosis was to enroll in a clinical trial, telling me that even if it didn’t work for him, maybe it could help somebody else…
Read MoreMonthly Scientific Update – July 2022 (Clinical, Genomic, and Transcriptomic Data Profiling of Biliary Tract Cancer Reveals Subtype-Specific Immune Signatures)
Kelly Butler, Dr. Reham Abdel-Wahab A recent study in Precision Oncology examined the diverse genetic and molecular profiles of biliary tract cancers (BTCs). With an eye toward therapeutic value, the study aimed to identify characteristics of each BTC subtype that confer responsiveness to targeted therapies and immunotherapies. The researchers examined a group of 454 BTC…
Read MoreMichael William Kennedy
May 6, 1958 – June 20, 2022 “Wherever a beautiful soul has been, there is a trail of beautiful memories.” Thank you, family and friends, for your support and kindness which has meant so much to us. Your donation will help fund research that will hopefully give someone else better odds. We truly appreciate your…
Read MoreBerta Alicia Barraza
English Español English If roses grow in heaven, Lord please pick a bunch for me, Place them in my mother’s arms And tell her they’re from me – Dolores M. Garcia On Sunday, June 12, 2022, at the age of 60, God called Berta Alicia Barraza to join her heavenly family. Berta Barraza passed peacefully,…
Read MoreShelley Edgarton Haus
September 8, 1972 – June 8, 2022 On June 8, 2022, we lost our beloved daughter, sister, wife, mother, niece, aunt, and friend, Shelley Edgarton Haus, to intrahepatic bile duct cancer, following a diagnosis on November 10, 2021. She took on her diagnosis and disease in the same way she approached everything in life –…
Read MoreSuzi Della Volla
On June 6, 2022, our cherished sister and friend, Suzanne “Suzi” Della Volla lost a courageous battle with cancer (a rare bile duct cancer called intrahepatic cholangiocarcinoma). We have faith that she is healed and whole again with Jesus. Suzi was the most loving and dedicated sister to Toni Littleton, Karl Hammerschmidt and Erika Gilbreth,…
Read MoreChris France
Thank you for contributing to The Cholangiocarcinoma Foundation (CCF). Cholangiocarcinoma (bile duct cancer) is a rare form of cancer with no known cure. We reached out to CCF and were connected to a Patient Advocate, Emma Mach. She quickly came up to speed with the specifics of Chris’ diagnosis and helped us navigate potential treatment…
Read MoreEmelita (Rita) Thorne
11/20/1962- 05/28/2022 Emelita (Rita) Thorne battled with cancer (a rare bile duct cancer called intrahepatic cholangiocarcinoma) and Chronic Myeloid Leukemia (CML) since 2018. She was a cancer warrior and inspiration to her many followers as she bravely shared her journey through Chemo. A champion of volunteerism and philanthropy herself, Rita, her husband David and sons…
Read More🤚🏻 Five for Friday – 5 NCSD Activities that Celebrate Survivorship
Home / Blog / 🤚🏻 Five for Friday – 5 NCSD Activities that Celebrate Survivorship June 5th is National Cancer Survivors Day (NCSD). This year marks the 35th Annual NCSD, which is a day for cancer survivors to stand together and show the world that life after a cancer diagnosis can be meaningful, fulfilling, and…
Read MoreVirendra Srivastava
Jan 1, 1950 – May 23, 2022 Our father was a loving, compassionate and courageous soul. As a Marine Engineer for 40 years, his stories from traveling around the world gave us an insight into his grit and determination to live life to the fullest. As a family man, his caring nature was limitless and he…
Read MoreTaramattie Sinanan
Dear family and friends, First of all, on behalf of our entire family, we would like to say thank you from the bottom of our hearts for supporting us during this very difficult time. Your words of support, encouragement and kindness have meant so much to us, and have helped us to begin our journey…
Read MoreCCF Celebrates National Cancer Survivors Day
Let’s show the world what life after cancer looks like! On National Cancer Survivors Day®, the Cholangiocarcinoma Foundation will join thousands of people in hundreds of communities throughout the world to celebrate life. This special day is an opportunity for cancer survivors to connect with other survivors, celebrate milestones, and acknowledge the contributions of the families,…
Read MoreMary Lay
Mary Fritzsche Clements Lay, beloved mother, grandmother, great grandmother (Gigi), sister and friend to all, passed away on Friday, May 6, 2022 surrounded by her loving family. Mary was born in 1939 in Chicago, IL to Arthur Hugo Fritzsche and Elyce Ann Adams. Her father was a baker and the family lived above the bakery. …
Read More🤚🏻 Five for Friday – New Items in the CCF Store (and 25% off coupon)
Home / Blog / 🤚🏻 Five for Friday – New Items in the CCF Store (and 25% off coupon) The Cholangiocarcinoma Foundation Store has new items! All proceeds from your purchases support CCF programs and services. Here are new items recently added with an opportunity to get 25% off using the code Mom25 from April 29 to…
Read MoreFive for Friday – Ways to Get Connected to the CCF Community to Find Support
Home / Blog / Five for Friday – Ways to Get Connected to the CCF Community to Find Support Having strong supportive relationships is known to provide emotional help during stressful times, give greater levels of happiness, and inspire hope. Here are five ways to get connected to the CCF community and find support: Virtual…
Read MoreSharon Whish
1/7/1951 – 4/14/2022 On April 14, 2022, Sharon Whish lost her long battle with bile duct cancer. Sharon was the devoted and loving wife to Myron Whish, proud mother and grandmother to daughter, Kimberly Rogers (Kelvin Rogers); son, Bryan Whish (Stefanie Raymond-Whish); grandchildren: Darby Raymond-Overstreet, Cameron Rogers, Colby Rogers, Cade Whish, Colton Whish, Dax Whish;…
Read MoreWarren Estis
It is with great sorrow and sadness that we write to inform you of the passing of our father, Warren A. Estis. Our father was a true titan of real estate who embraced litigation with the passion and enthusiasm of an avid sports fan. He was known to judges and opposing counsel for his fierce,…
Read MoreDennis Schwartz
11/01/1939 – 04/06/2022 On April 6, 2022, a beloved husband and father, Dennis (Denny) Schwartz, passed away following a short battle with a recently diagnosed and aggressive rare cancer of the bile duct called Intrahepatic Cholangiocarcinoma. Dennis was a loving husband to elementary school teacher Nancy (retired), and a mentor for his son Dan, a…
Read MoreLaurel Whitney Mason Clary
July 25, 1986 – April 2, 2022 It’s with great sadness that our family shares the passing of Laurel Whitney Mason Clary. Our angel earned her wings after a brave and hard fought battle with cholangiocarcinoma. Due to complications from her treatment, we lost her suddenly on Saturday, April 2nd at the age of 35.…
Read MoreFrank Barba
I am fundraising for the Cholangiocarcinoma Foundation in honor of my father, Frank R. Barba, who passed away from this disease in November of 2021. He was diagnosed with NASH in May of 2017, and on the evening of July 20th, 2021, we received a call we had been waiting years for. It was his…
Read MoreVirtual Support Groups
The Cholangiocarcinoma Foundation offers support groups and educational webinars to allow people impacted by the disease to share personal experiences and learn from others, including medical professionals and disease experts. Participants must register to attend the virtual sessions that may include special guest moderators. Patient Support Groups 1st Thursday and 3rd Monday of each month…
Read MoreValue of Research Studies
A survey is a tool for collecting real-world information. Patients and their caregivers are critical to the success of survey-based research. Participating in survey-based research helps researchers discover new information and identify additional scientific questions. It also, helps them explore potential approaches to address these questions in studies or clinical trials. To learn more about…
Read MoreScott Terpstra
Click here to contribute in the name of Scott Terpstra If you wish to donate by phone, please call (888) 936-6731 and speak with Laurie Kikel. If you wish to donate by mail, send check to: CCF – In honor of Scott Terpstra 5526 West 13400 South, #510 Herriman, Utah 84096, USA
Read MoreLinda Jasinski
Linda Theresa (Huie) Jasinski, age 72, of Southwest Ranches, Florida, passed away peacefully on March 23rd 2022 after a courageous journey with cancer. In celebration of her life and to honor her memory, we are initiating a fund-raising campaign for the Cholangiocarcinoma Foundation. Linda became a flight attendant in 1973, enjoying a long and fulfilling career…
Read MoreFive for Friday – 5 CCF Resources
Home / Blog / Five for Friday – 5 CCF Resources The Foundation’s website is full of important educational information for cholangiocarcinoma patients. Here are five (5) resources at your disposal. For more information, please visit the Newly Diagnosed/New to CCF webpage. Specialist Map Biomarker Testing CCF Blog 100 Questions & Answers About Cholangiocarcinoma E-book Discussion…
Read MoreRochelle (Shelly) Glick Gryfe
Click here to contribute in the name of Rochelle (Shelly) Glick Gryfe If you wish to donate by phone, please call (888) 936-6731 and speak with Laurie Kikel. If you wish to donate by mail, send check to: CCF – In honor of Rochelle (Shelly) Glick Gryfe 5526 West 13400 South, #510 Herriman, Utah 84096, USA
Read MoreD. Frederick Weaver
Fred Weaver, 71, of Palmyra, formerly of Hershey, passed away early on the morning of March 4, 2022. Born on October 30, 1950, in Hershey, son of the late Hubert L. and Joan Elizabeth (Smith) Weaver. Fred was a graduate of Hershey High School, Class of 1969. Growing up on Derry Road, Fred could always…
Read MoreBrian Wolkenberg
Brian Wolkenberg was diagnosed with cholangiocarcinoma in the Autumn of 2020 after a routine screening for his liver disease, Primary Sclerosing Cholangitis (PSC). Because PSC eventually causes liver failure, the initial treatment plan was a liver transplant to address both conditions. Unfortunately, his cancer spread before he was able to find a liver donor and…
Read MoreJeffrey Baker
Jeffrey Dennis Baker passed away on February 20, 2022, after a three-year battle with Cholangiocarcinoma. He was surrounded by his family as he went peacefully to be with his Lord Jesus Christ. Jeff was born on May 12, 1973, in Belleville, IL. Jeff’s first battle with cancer occurred in 1987 when he was diagnosed with…
Read More$550,000 in research grants awarded by the Cholangiocarcinoma Foundation to fund early-career investigators at renowned institutions
Research grants were made to Amsterdam University Medical Center, Duke University, Icahn School of Medicine at Mount Sinai, Johns Hopkins University School of Medicine, Khon Kaen University Thailand, Massachusetts General Hospital Cancer Center/ Harvard Medical School (2), National Institutes of Health, Regents of the University of Minnesota, University of Michigan, and UPMC Montefiore The Cholangiocarcinoma…
Read More2nd Annual Cholangiocarcinoma Foundation Poster Abstract Awards
3 winners awarded for making significant contributions in research for rare cancer known as cholangiocarcinoma The Cholangiocarcinoma Foundation announced the 2022 Poster Abstract Awards at its annual conference that took place virtually and in-person in downtown Salt Lake City. The award winners were honored for making significant contributions with a visual overview of cholangiocarcinoma research…
Read More2022 Mark R. Clements Award goes to Jan Meyer, George Riddle and Dr. Mitesh Borad at 9th Annual Cholangiocarcinoma Foundation Conference
Award winners are honored for making significant contributions towards finding a cure for cholangiocarcinoma through advocacy, vision, innovation, collaboration. The Cholangiocarcinoma Foundation announced its 2022 Mark R. Clements Award honorees at its annual conference in Salt Lake City, Utah. The award winners were honored for making significant contributions in supporting patients and rendering cholangiocarcinoma a…
Read MoreDaniela Elizabeth Egas
Egas, Daniela Elizabeth, 42, of Guayaquil, Ecuador, passed away on 2/19/22 surrounded by family and supported by many friends, Daniela had a courageous fight against cancer. Our hearts are heavy, but we know she is enjoying heaven and looking upon us. Daniela was preceded in death by her beloved grandma, Teresa. She is survived by her…
Read MoreFive for Friday – 5 ways to prepare for the Annual Conference
Home / Blog / Five for Friday – 5 ways to prepare for the Annual Conference The 9th Annual Cholangiocarcinoma Foundation Conference starts Wednesday, Feb. 23rd. The virtual platform opens at 8:00 a.m. (MDT) on Monday, February 21st. You will receive an email that morning with a link to log in to the platform. The Foundation…
Read MoreArpana Sathe Kagal
September 7, 1969 – February 14, 2022 Arpana Sathe Kagal of Plano, Texas passed away on February 14, 2022, at the age of 52. She was born on September 7, 1969, to Shantaram and Alaka (Mahableshwarkar) Sathe in India. Arpana married Nick Kagal on June 19, 1993, in Houston Texas. Arpana was a loving mother,…
Read MoreInitiative to Map the Cholangiocarcinoma (CCA) Landscape in Europe Will Help Improve Patient Outcomes
Scientists advocate for education programs to raise awareness and improve early diagnosis, survival, and quality of life of CCA patients in the largest and most complete multicenter study of CCA, published in the Journal of Hepatology Bile duct cancer, also known as cholangiocarcinoma (CCA), is a rare cancer often diagnosed only at an advanced stage.…
Read MoreLetter to the editor: Learn about bile duct cancer
February is Cholangiocarcinoma Awareness Month. Never heard of cholangiocarcinoma? You’re not alone. Also known as bile duct cancer, this devastating disease occurs in the body’s bile duct system, which carries bile from the liver to the small intestine. Bile duct cancer is one of the deadliest cancers because symptoms can be overlooked or indicate something…
Read MoreWebinar: Elevating Precision Medicine to the Forefront of Every Cancer Journey to Deliver the Right Medicine to the Right Patient
Cancer behaves differently in each person, and there is no one-size-fits-all treatment. Precision medicine makes cancer diagnosis more accurate and improves the ability to predict which treatments will work best. However, for precision medicine to be a real option for every patient with cancer, many more medicines targeting rare genomic drivers, such as NRG1 fusions,…
Read MoreSusan Harton
Beloved wife, daughter, sister, and friend, Susan Harton’s love of life did not come to an end with her death. Susan passed away peacefully surrounded by family on February 2, 2022, at the age of 41 after a courageous year battling a rare bile duct cancer. She fought a battle to inspire us all, with a…
Read MoreCholangiocarcinoma Foundation congratulates AstraZeneca TOPAZ-1, the first Phase III trial to show adding immunotherapy to standard chemotherapy can increase overall survival in advanced biliary tract cancer
On behalf of patients and families impacted by cholangiocarcinoma (bile duct cancer), the Cholangiocarcinoma Foundation congratulates AstraZeneca and its positive results from the TOPAZ-1 Phase III trial. The trial showed Imfinzi (durvalumab) in combination with standard-of-care chemotherapy resulted in improved overall survival (OS) versus placebo plus chemotherapy in patients with advanced biliary tract cancer (BTC).…
Read MoreDeborah (Debbie) Robbins
July 20th, 1952 – January 19th, 2022 To know her was to love her. And if you were lucky enough to know Debbie Robbins, she made sure to tell you that she loved you. She also never missed an opportunity for a hug and a kiss. Her true gift in life was making people laugh,…
Read MoreTrent Dyess
Trent was the most loving and true Jack of all trades to the fullest. He was the best gift to all of us that love him. His faith only grew stronger as we faced this war against cancer. He touched so many lives with his dedication to that relationship. We miss him dearly. This type…
Read MorePatricia “Patti” Korth
Patricia “Patti” Korth passed away on January 11, 2022, exactly five years to the day she was diagnosed with Cholangiocarcinoma and given only 8-10 months to live. With Mom’s sheer will to live and love, and the incredible care of Dr Ben George and his team at Froedtert, she beat all odds. Our mom was…
Read MoreVolunteers make big strides with raising awareness, funding research for the Cholangiocarcinoma Foundation
In 2021, volunteers for the Cholangiocarcinoma Foundation (Foundation) made big strides in raising awareness and funding research to render the lethal bile duct cancer treatable. Supporting and managing the volunteers was recently recognized by the Utah Nonprofit Association that awarded the Foundation with its credential badge for volunteer management. “We see this achievement as the…
Read MoreJudith Ressmeyer Hinsch
Judith (Judy) Ressmeyer Hinsch, of Plainview, NY, passed away on January 8, 2022 of Cholangiocarcinoma (Bile Duct Cancer) at the age of 69. Judy was born in Baltimore, MD and grew up on Long Island, in New York. She attended Our Redeemer Lutheran School in Seaford, NY, Long Island Lutheran High School in Brookville, NY,…
Read MoreWebinar: “The PERIO-02 Trial – Enabling Immunotherapy for Intrahepatic Cholangiocarcinoma”
In this webinar, Steven C. Katz, M.D., FACS, Chief Medical Officer at TriSalus Life Sciences, leads a review of the Pressure-Enabled Regional Immuno-Oncology (PERIO-02) clinical trial for adults with intrahepatic cholangiocarcinoma and hepatocellular carcinoma, the most common primary liver tumors. Dr. Katz is joined by Venu Pillarisetty, M.D., Professor of Hepatopancreatobiliary Surgery at the University…
Read MoreKenneth Hudgins
On December 24, 2021, Kenneth Hudgins lost a courageous thirteen-month battle with cancer (a rare bile duct cancer called intrahepatic cholangiocarcinoma). Kenneth was a devoted husband to Brenda, a loving father to Rebecca and Amanda, and proud grandfather to Addie and Emma, and a caring son to Gene and brother Chris. In lieu of flowers,…
Read MoreParu Kanu Patel
Paru Kanu Patel, age 82 of Zadeshwar, Gujarat, India, passed away on December 18, 2021, with her husband at her side. Paru was born on March 1, 1939, in Zadeshwar, Gujarat, India to Dahiba and Chimanbhai Patel. Paru is survived by her husband of 61 years, Kanu of Dabhoi, Gujarat, India; 3 daughters, Nina of…
Read MorePhung Xuan Le
June 1st, 1958 – December 7th, 2021 On December 7th, 2021 Phung Xuan Le passed away less than two months after being diagnosed with cholangiocarcinoma (a rare cancer of the bile duct). Phung was a loving, patient, and supportive husband to Mymy Phu and an unsurpassed father to son Phi and daughter Brenda. Cholangiocarcinoma is…
Read MoreLong-Term Survivor Stories – Robert Bickel
Working out was something of a side-hustle for me the last three years. I used it as motivation to quit smoking and set the stage for the next chapter of my life. With two daughters in college that were not too far off-major milestones and such. Despite that vice, I maintained a fairly healthy lifestyle…
Read MoreFive for Friday – 5 impactful ways you can make a year-end gift
Home / Blog / Five for Friday – 5 impactful ways you can make a year-end gift As 2021 comes to a close, there are a number of opportunities to support the Foundation. Your year-end giving does make a long-term impact. This week, we’d like to share five impactful ways you can make a year-end gift…
Read MoreLong-Term Survivor Stories – Jacqueline O’Brien
My name is Jacqueline O’Brien, and I am blessed with a wonderful husband, Sean, and our close-knit family here in New York City. My son Matt and his wife, Corrina, added to the richness of our life with the birth of my first grandchild, Millicent Rae, in May. Next May, my son, Danny, will be…
Read MoreLong-Term Survivor Stories – Matt Reidy
Hello. I’m Matt Reidy. I live in Richmond, VA. I’m a retired IT executive. I’m also married with four children, now age 12 through 25. I enjoy woodworking, sailing, and water sports. MY STORY I was diagnosed in December 2013 with stage II perihilar cholangiocarcinoma. I was devastated at diagnosis when I learned there is…
Read MoreFive for Friday – 5 ways to prepare for the conference
Home / Blog / Five for Friday – 5 ways to prepare for the conference Registration for the 9th Annual Cholangiocarcinoma Foundation Conference is open! The annual conference takes place the week of Feb. 23-25, 2022. Join more than 500 patients, caregivers, scientists, researchers, and healthcare providers from around the globe to learn about the latest in…
Read MoreLong-Term Survivor Stories – Ellyn Goodrich
MY STORY I am a patient and an advocate, but first, I am a mother to three amazing sons. I live in the Pacific Northwest on a remote island in the San Juan archipelago. It is only accessible by boat or plane, and it does not have any traffic lights. The rush-hour consists of ranchers…
Read MoreSusan McKeough Bacon
Susan McKeough Bacon passed away peacefully from cholangiocarcinoma on November 15, 2021 at the age of 68. She was comforted and supported by many family and friends throughout her diagnosis and especially during her last week on home hospice. Susan was a beloved mother, Gaga, sister, daughter, aunt, and friend. Susan was born March 3,…
Read MoreGiving Tuesday 2021
This year was an incredible success, because of you, we raised more than $150,000! Last year on Giving Tuesday, people came together to raise more than $2.5 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…
Read MoreThomas L. Casey
April 7, 1984 – November 10, 2021 Thomas L. Casey, 37, of Merriam, Kansas, passed away on Nov. 10 after a long battle with bile duct cancer. Tom died peacefully at the Kansas City Hospice House surrounded by loving family members, friends and his dog, Gregory. Tom was born in Cleveland, Ohio, on April 7,…
Read MorePatient Scholarships for our 2022 Annual Conference
It is with great pleasure the Cholangiocarcinoma Foundation announces it is giving patient scholarships for its 9th Annual Cholangiocarcinoma Foundation Conference taking place February 23-25, 2022, in Salt Lake City. The non-transferrable scholarships for patients cover registration, hotel, air, and ground transportation. The Foundation is thrilled to award scholarships this year because 2020 and 2021…
Read MoreJoseph Puleo
April 12, 1955 – November 10, 2021 On November 10, 2021, Joseph Puleo lost a courageous battle with cancer (a rare bile duct cancer called intrahepatic cholangiocarcinoma). Joseph was the loving husband to Joanne, a wonderful father to his two children J.P. and Kristy and the best grandfather to his two grandsons, Clark and Raylan.…
Read MoreLong-Term Survivor Stories – Arlene Dworetsky
Hi, my name is Arlene Dworetsky. I’m from Glastonbury, CT, originally from Hartford, CT. I’m a retired public elementary school teacher with more than 30 years of teaching experience. Currently, I’m a reading/math tutor for a public 3rd-5th grade elementary school in my area. I have a husband, two sons, and a beautiful baby grandson.…
Read MoreFive for Friday – 5 opportunities to 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.
Read MoreVietnam veterans with cholangiocarcinoma get help filing claims with the VA in commemoration of Veterans Day
Navigating how to file claims with Veterans Affairs can be daunting when diagnosed with a rare disease such as cholangiocarcinoma (bile duct cancer).
Read More2 Men, 1 mission: Run marathons to honor their wives and raise funds to benefit the Cholangiocarcinoma Foundation
Delorean Ostrom of Suwanee, GA, and Tom O’Meara of Pearl River, NY, have something in common that they wish they didn’t. Their wives both have rare bile duct cancer called cholangiocarcinoma.
Read MoreLong-Term Survivor Stories – Christy Landon
My name is Christy Landon. I grew up in the northeast Ohio area and currently live in Mansfield with my husband, Troy. We have four adult children: Conner, Alexis, Logan, and Alec. They are all attending college. I also have three grandchildren. MY STORY Prior to diagnosis, I was a family and consumer sciences teacher…
Read MoreJeffrey May
Jeffrey H. May passed away on November 1st surrounded by his family after a courageous battle with cholangiocarcinoma. He was 61 years old. Jeff was born in Manhasset NY to Rosalind and Eric May. Jeff loved growing up in Port Washington amidst extended family and remained good friends throughout his life with some of his…
Read MoreSanjay S. Patel
April 29, 1962 – October 27, 2021 Loving husband, father, grandfather, brother, uncle and friend to all. We will forever cherish his fun-loving jokes, jovial character and love for everyone. Click here to contribute in the name of Sanjay S. Patel If you wish to donate by phone, please call (888) 936-6731 and speak with Laurie Kikel.…
Read MoreLong-Term Survivor Stories – Bekki Slater
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…
Read MoreGCA Webinar: Why better coding is needed
There is currently a lack of cholangiocarcinoma-specific educational resources that are designed to support the adoption of ICD-11 among healthcare professionals. As a result, the Global Cholangiocarcinoma Alliance (GCA) is organizing an ICD-11 webinar titled “An overview of CCA: Why better coding is needed.”
Read MoreMichael F. Cunningham
April 18, 1955 to March 18, 2020 Michael F. Cunningham, of Dorchester, passed away at age 64 on Wednesday, March 18, 2020, after a 15 month battle with Cholangiocarcinoma (bile duct cancer). Mike was a lifelong resident of Dorchester, MA. He also spent a great amount of time in Quincy visiting with his family and…
Read MoreIn Remembrance of Victoria S.L. Wong
March 4, 1939 – September 5, 2021 Victoria “Vicky” Wong was born Victoria Shui Lang Wan on March 4, 1939, in Paris, France, the third of eight children born to Olga Pearl Jung and Wan Wai Nam. When World War II events began developing in Europe, she moved along with her family safely to Saigon,…
Read MoreMarlene G. Walls
June 13, 1951 – September 16, 2021 Marlene Walls, 70 of West Lafayette, lost a difficult battle with intrahepatic cholangiocarcinoma, passing away peacefully Thursday, Sept 16, 2021, with family by her side. Foreshadowing a life spent faithfully in service of others, Marlene earned a Bachelor’s in Social Work from Latrobe University, Melbourne, Australia in 1981.…
Read MoreRare cancer funding is being raised by Ruth Stage, Inc. to benefit the Cholangiocarcinoma Foundation
Helping to raise funds for a grossly underfunded disease is something you rarely see from a theater company. Yet, that is exactly what Ruth Stage, Inc…
Read MoreVictoria “Vicky” Wong
On September 5, 2021, a cherished wife, mother, grandmother, sister, aunt, cousin, and friend lost a courageous four-year battle with cancer (a rare bile duct cancer called intrahepatic cholangiocarcinoma). In celebration of Vicky’s life and to honor her memory, we are initiating a fund-raising campaign for the Cholangiocarcinoma Foundation. Please consider making a contribution to…
Read MoreMichael James Davenport
03/18/1952 – 08/29/2021 On August 29, 2021, a cherished friend and member of our community, Michael Davenport lost a courageous twelve-month battle with cancer (a rare bile duct cancer called intrahepatic cholangiocarcinoma). Michael was the loving husband to his wife Darla Davenport, and a wonderful father to his two daughters Erin and Lauren, and son,…
Read MoreGensheng Yu
Gensheng Yu was a beloved father and husband who tirelessly worked to bring his family a better life in Canada. Born in Suzhou, China, he was the first in his family to attend university, where he studied Mechanical Engineering. After excelling at business, he immigrated to Canada in 2001 where he laid the foundation for…
Read MoreCholangioConnect Update – Patty Maxin
Just shy of the fourth anniversary of CholangioConnect, there was a celebratory enthusiasm as the administrative entry registered its 500th connection through the Foundation’s mentoring platform.
Read MoreCholangioConnect Mentee Testimonials – Jessica Thomas
CholangioConnect was my mooring in a hurricane. Life seemed impossibly full of information and emotions, and I was so grateful for my mentor.
Read MoreCholangioConnect Mentee Testimonials – Rob Howard
Within hours of my dad’s cholangiocarcinoma diagnosis, I was online doing research trying to learn about this type of cancer. I soon found my way to the comforting and informative website for the Cholangiocarcinoma Foundation.
Read MoreDilip Kumar Saha
Our dear father, Dilip Kumar Saha, known as “Dil” to his family and friends passed away on Sunday, August 15th, 2021. He is survived by his loving wife Sipra, his son Soudip “Ted” and daughter-in-law Deepa, his daughter Nilova “Tina” and daughter-in-law Maria, and his grandsons Nithin and Ari. Sipra and Dil recently celebrated their…
Read MoreSusan Irene Zivanovic
Susan Irene Zivanovic (nee MacLean) passed on to eternal rest on August 12, 2021 at the age of 52 after a heroic battle with cancer in The Woodlands, TX. Born in Fergus, Ontario, Canada Susi called both Canada and Texas home and was proud to do so. Like the saying goes “Our parents saved the…
Read MoreBidding for the Cure
Thanks to everyone that participated! Help fund research that will move us closer to a cure. To celebrate the Cholangiocarcinoma Foundation’s 15th Anniversary, and to support our volunteer committee’s pledge to raise $150,000 to fund critical research into cholangiocarcinoma, we are holding our first-ever virtual silent auction – Bidding for the Cure. We are auctioning…
Read MoreWhispers Over My Shoulder
Excerpt from the ASCO Post, by Mairéad Geraldine McNamara, MB, PhD. When I interviewed for my current post as a first-time consultant in medical oncology in the United Kingdom, I was asked about my 5-year career plan. I remember some detail of my reply, but I don’t think it even remotely encompassed the depth of insight…
Read MorePaula Ann Marie Conte
December 16, 1954 – July 13, 2021 On July 13, 2021, Paula Ann Marie Conte, a cherished wife, daughter, sister, aunt, friend, Nana, and mom, lost a courageous 14 month battle with cancer. Paula was a strong and selfless woman, who put the needs of everyone else before her own. Lovingly referred to as “Nana”, her…
Read MoreEvelyn Richardson
01/08/1938 – 6/6/2021 On June 6, 2021, Evelyn Richardson lost a courageous six-month battle with cancer (a rare bile duct cancer called cholangiocarcinoma). In lieu of flowers, please consider making a contribution to this important initiative in Evelyn’s memory. The Richardson family thank you for honoring Evelyn’s memory by accelerating research for this devastating disease.…
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