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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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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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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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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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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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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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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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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A 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.

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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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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 – 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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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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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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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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Patricia 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…

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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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Julie 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…

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David 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…

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Monthly 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…

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Michael 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…

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Berta 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,…

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Shelley 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 –…

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Suzi 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,…

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Chris 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…

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Emelita (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…

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Virendra 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…

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Taramattie 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…

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CCF 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,…

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Mary 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. …

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Sharon 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;…

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Warren 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,…

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Dennis 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…

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Laurel 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.…

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Frank 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…

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Virtual 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…

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Value 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…

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Scott 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

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Linda 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…

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Five 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…

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Rochelle (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

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D. 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…

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Brian 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…

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Jeffrey 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…

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$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…

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2nd 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…

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2022 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…

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Daniela 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…

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Arpana 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,…

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Initiative 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.…

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Letter 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…

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Webinar: 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,…

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Susan 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…

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Cholangiocarcinoma 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).…

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Deborah (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,…

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Trent 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…

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Patricia “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…

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Volunteers 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…

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Judith 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,…

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Webinar: “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…

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Kenneth 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,…

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Paru 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…

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Phung 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…

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Long-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…

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Long-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…

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Five 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…

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Susan 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,…

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Giving 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…

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Thomas 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,…

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Patient 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…

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Joseph 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.…

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Long-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.…

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Long-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…

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Jeffrey 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…

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Sanjay 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.…

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GCA 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.”

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Michael 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…

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In 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,…

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Marlene 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.…

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Victoria “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…

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Michael 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,…

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Gensheng 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…

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Dilip 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…

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Susan 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…

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Bidding 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…

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Whispers 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…

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Paula 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…

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