🤚🏻 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…

Read More

🤚🏻 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…

Read More

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…

Read More

🤚🏻 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…

Read More

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.…

Read More

🤚🏻 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…

Read More

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,…

Read More

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…

Read More

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…

Read More

🤚🏻 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.…

Read More

🤚🏻 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…

Read More

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…

Read More

🤚🏻 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…

Read More

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…

Read More

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…

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 More

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…

Read More

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,…

Read More

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…

Read More

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…

Read More

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…

Read More

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…

Read More

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)…

Read More

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…

Read More

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.…

Read More

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…

Read More

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…

Read More

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,…

Read More

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)…

Read More

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…

Read More

Journey to Complete the Journey

Cold showers daily for two years Ice baths lasting 10-15 minutes a few times a week Swim 4-5 days a week, two-mile intervals during the week, longer swims on weekends Work, swim, sleep, repeat has been one man’s routine for the last two years. All his hard work and dedication are about to pay off.…

Read More

Social Security Disability Insurance Benefits

Cholangiocarcinoma patients in the United States can apply for Social Security Disability Insurance (SSDI) benefits on the Social Security website via the compassionate allowances program. Social Security defines cholangiocarcinoma as an approved medical condition under section 13.00 Cancer- Adult → 13.19 Liver or Gallbladder – cancer of the liver, gallbladder, or bile ducts. It is…

Read More

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…

Read More

Governor’s Signature Brings Awareness to Rare Cancer

COLUMBUS – Ohio Governor Mike DeWine signed into law this morning House Bill 537, legislation sponsored by State Representative Cindy Abrams (R-Harrison) to designate February 12 as Cholangiocarcinoma (pronounced koh-LAN-jee-oh-KAR-sih-NOH-muh) Awareness Day. “I’m proud to sponsor this important legislation. With more awareness, we hope to give patients and medical providers the foresight to catch this…

Read More

Global patient registry to expand cholangiocarcinoma knowledge worldwide offered by Cholangiocarcinoma Foundation in partnership with Invitae

Global patient registry to expand cholangiocarcinoma knowledge worldwide offered by Cholangiocarcinoma Foundation in partnership with Invitae  The Cholangiocarcinoma Foundation (CCF) in partnership with Invitae has updated its global patient registry, offering a unique international data pool for cholangiocarcinoma (bile duct cancer) history and treatment worldwide. The updated International Cholangiocarcinoma Patient Registry (ICPR) is designed to…

Read More

Racing for Hope Journal Entry 17

It’s been 4 days since I completed the Grandma’s marathon in Duluth, MN. The race wasn’t my fastest, and I really had to get through some things in my head to make it through the last 7.2 miles. Let’s start with the morning of the race. I had a nice 3 am wake-up call. Instead…

Read More

5 Trials at ASCO 2022

Home / Blog / 5 Trials at ASCO 2022 The American Society of Clinical Oncology (ASCO) meeting took place in Chicago the first week of June. The Foundation provided an information booth and participated in premier scientific events for oncology professionals, patient advocates, industry representatives, and major media outlets worldwide. Some of the latest cholangiocarcinoma…

Read More

Happy Retirement to Donna Mayer

Donna Mayer

The Cholangiocarcinoma Foundation announces the retirement of Donna Mayer. Donna worked tirelessly to help build CCF into a trusted, global source of cholangiocarcinoma information and resources. Her work on the CCF annual conference and research fellowship programs was exceptional and helped to extend the work of CCF across the globe. For nearly a decade, Donna led programs and developed policies that increased awareness about…

Read More

🤚🏻 Five for Friday – 5 CholangioConnect Resources

Home / Blog / 🤚🏻 Five for Friday – 5 CholangioConnect Resources Through peer-to-peer mentorship with a fellow patient or caregiver, CholangioConnect is creating a community of hope. Please consider becoming a mentor and making a new friend. Here are five resources for your consideration: Learn more about what mentors do Discover how CholangioConnect changed Jessica’s life…

Read More

🤚🏻 Five(+3) for Friday – 8 New Biomarker Stories

Home / Blog / 🤚🏻 Five(+3) for Friday – 8 New Biomarker Stories Biomarker testing opens doors to personalized treatment options, including clinical trials, for cancer patients. The Foundation is proud to present eight patient stories for whom biomarker testing positively impacted their cancer journeys. Julie Thole Ben Lazcano Sharon Hockenberry Hadley Recor John Pierce Ivy Elkins…

Read More

Bill recognizing Cholangiocarcinoma Awareness Day clears Ohio Senate, heads to governor

Rep. Cindy Abrams (R-Harrison) The Cholangiocarcinoma Foundation congratulates Rep. Cindy Abrams (R-Harrison) and the Ohio legislature for the passage of House Bill 537. The legislation sponsored by Abrams designating February 12 as Cholangiocarcinoma Awareness Day unanimously passed the House Health Committee, Senate Health Committee and the Ohio House. On Wednesday, the bill was also favorably…

Read More

Monthly Scientific Update – June 2022 (Comparison of Hepatic Arterial Infusion Pump Chemotherapy vs. Resection for Patients With Multifocal Intrahepatic Cholangiocarcinoma)

The role of locoregional therapy in treating intrahepatic cholangiocarcinoma (iCCA) patients is still limited. Therefore, a group of researchers assessed if using a hepatic arterial infusion pump (HAIP) to deliver high-dose chemotherapy directly into the liver is similar to surgical resection. The researchers enrolled 319 patients with multifocal iCCA, including 141 patients in the HAIP…

Read More

Racing for Hope Journal Entry 16

Marathon 5 Here we are a few days away from marathon number 6, and I’m just now able to put into words what marathon 5 was to me. We will start with it was hard, so so incredibly hard! It was my second slowest marathon ever at 6 hours 2 minutes and 23 seconds. After…

Read More

🤚🏻 Five for Friday – 5 Episodes of Cholangio Heroes

Home / Blog / 🤚🏻 Five for Friday – 5 Episodes of Cholangio Heroes The Foundation is pleased to announce its first-ever video podcast, Cholangio Heroes. A wide array of guests impacted by cholangiocarcinoma are featured in each weekly episode. Cholangio Heroes can be found on CCF’s YouTube Channel, Spotify, Podbean, Frontliners TV, HeroGo TV, Local Now, VivaLive…

Read More

🤚🏻 Five for Friday – 5 Recent Articles of Interest

Home / Blog / 🤚🏻 Five for Friday – 5 Recent Articles of Interest The Cholangiocarcinoma Foundation is sharing news and research updates with the community to inspire hope. Here are five recent articles of interest: Zymeworks Reports Last Patient Enrolled in Pivotal Study of Zanidatamab The International Cholangiocarcinoma Research Network Initiatives Oncologist Stories: Lincoln…

Read More

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,…

Read More

Innovative ‘think tank’ comprised of cholangiocarcinoma experts to meet to develop concrete project ideas to advance the field

Twenty-nine expert scientists and clinicians from the world’s leading academic institutions are convening in Las Vegas for the first time in a three-day meeting, Cure Cholangiocarcinoma Think Tank (C2T2). The working meeting, May 12-14, was made possible through generous donations to the Cholangiocarcinoma Foundation, the premier global resource in research, education, and public awareness of…

Read More

Racing for Hope Journal Entry 15

Alright, so it’s been a week and a half or so since I ran the Silos Waco marathon. It’s been hard to put into words how I felt about the race/experience. I’ll start at the beginning. Our flight to Austin, Tx was uneventful. Our girls love to fly! We then got our rental car and…

Read More

Monthly Scientific Update – May 2022 (Ramucirumab)

Recently, a group of researchers designed a phase II, single-arm clinical trial to evaluate the use of Ramucirumab in the treatment of advanced biliary tract cancer patients. Ramucirumab is a monoclonal antibody targeting vascular endothelial growth factor receptor 2 (VEGFR-2). The researchers enrolled patients with ECOG performance status 0-1 who were previously treated with gemcitabine-based…

Read More

Enjoy any activity, anywhere, and raise money to help fund a cure for cholangiocarcinoma, a rare cancer of the bile ducts

SALT LAKE CITY, UT – TeamCCF is inviting athletes who want to fundraise for the Cholangiocarcinoma Foundation to do so in a fun and positive way. Moving for the Cure takes place July 24-30, 2022, and involves participants of all ages, and any athletic ability, raising money through a fitness event of their choosing. Participants…

Read More

Five for Friday – Highlighting 5 Volunteer Fundraisers

Home / Blog / Five for Friday – Highlighting 5 Volunteer Fundraisers April is National Volunteer Appreciation Month. CCF honors volunteers who are making significant contributions by donating their time and talents to raise money for research. In commemoration of Appreciation Month, consider supporting the following volunteer-organized events: 3rd Annual Quack Out Cholangio Racing for Hope…

Read More

Annual Conference & Cholangiocarcinoma Awareness Month Highlights

The 9th Annual Cholangiocarcinoma Foundation Conference was a success. More than 50 guest speakers, 40 poster presentations, and several networking events was attended by more than 250 in-person attendees and more than 900 virtually from around the world. The three-day gathering was thanks to sponsors and the leadership of co-chairs Jesper Anderson, PhD, and Lipika…

Read More

Calling all Volunteers

The Cholangiocarcinoma Foundation is looking for volunteers to be part of the TeamCCF Cheer Squad.  TeamCCF has two members who are raising money all year long for the Foundation.  Delorean Ostrom is running a marathon every month in 2022 for his fundraiser Racing for Hope and Jonathan Whiting is swimming the English Channel in July…

Read More

Five for Friday – Surveys that impact research

Home / Blog / Five for Friday – Surveys that impact research Providing answers to a few research questions helps the Cholangiocarcinoma Foundation further research. There are four short surveys attached to this email that patients or their caregivers can take to help the research community better understand the natural history of this disease. Your…

Read More

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 Group 1st Thursday of each month 4:00 p.m. (Eastern)…

Read More

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…

Read More

Racing for Hope Journal Entry 14

Welcome back! So where we left off, I had just done my long run of 10 miles after Mandy got out of the hospital. What I didn’t tell you is I woke up that day with hip and back pain. It has persisted and worsened this entire week, and I haven’t been able to run…

Read More

Monthly Scientific Update – April 2022 (the impact of Capecitabine (Xeloda) as adjuvant therapy for surgically resected biliary tract cancers)

Recently, a group of medical oncologists assessed the long-term outcome of a randomized phase III BILCAP trial to evaluate the impact of Capecitabine (Xeloda) as adjuvant therapy for surgically resected biliary tract cancers. Between 2006 and 2014, 447 patients with resectable biliary tract cancer were enrolled in this study. After resecting the tumor, patients were randomized into two…

Read More

The Sugar Shack

21 miles of hope QR Code

A successful swim is built around endurance but support from others is a mental lift when the physical body is fatigued. Barbi Frances was aware of that and decided to make sure her customers did, too. Posted in her downtown Kirkwood store, The Sugar Shack, is an article from the Webster-Kirkwood Times and a container…

Read More

Five for Friday – 5 ways volunteers lead the change

Home / Blog / Five for Friday – 5 ways volunteers lead the change It’s time to celebrate how volunteers serve with #ccahope. The Foundation is thankful to all of the incredible volunteers who inspire us and work so hard day in and day out to support patients. In the past year, volunteers donated more…

Read More

Racing for Hope Journal Entry 13

We sit here a little over 3 weeks past marathon #3 and a little less than a month from marathon #4. The podcast I was interviewed for has now been released, and the love and support since have been amazing! Training has been hard recently, and I find myself lacking motivation at times. When it’s…

Read More

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…

Read More

Five for Friday – 5 ways to use nutrition to fight cancer

Home / Blog / Five for Friday – 5 ways to use nutrition to fight cancer Happy National Nutrition Month! “Nutrition is an important thing to consider when you’re getting cancer treatment. Eating healthy foods before, during, and after treatment can help you feel better and stay stronger. But cancer and its treatment can sometimes…

Read More

Racing for Hope Journal Entry 12

Race #3 was awesome, and it was followed by 3 days of some incredible rest! On the third day of rest, I was interviewed by the Marathon Training Academy Podcast. They have been a great source of information that has helped me on this journey. Their podcast has helped me in formulating a training plan…

Read More

Five for Friday – 5 Annual Conference Sessions

Home / Blog / Five for Friday – 5 Annual Conference Sessions The 9th Annual Cholangiocarcinoma Foundation Conference was a tremendous success! Attendees helped to assemble 1,500 care kits for newly diagnosed patients, 200+ people joined CCF’s Light it Green for CCA Walk, 250 participants joined the conference in-person, and 900+ joined virtually. Session recordings from the…

Read More

60-year-old St. Louis man trains to swim the English Channel to honor his late wife who died from cholangiocarcinoma

Jonathan Whiting raises rare bile duct cancer awareness with ‘21 Miles of Hope’ fundraising campaign to benefit the Cholangiocarcinoma Foundation For nearly two years, Jonathan Whiting has been training to swim the English Channel in honor of his late wife, Lori Whiting, and to raise awareness and funds for the Cholangiocarcinoma Foundation. The rare bile…

Read More

Racing for Hope Journal Entry 11 – Marathon #3

Just a couple days after finishing marathon #2, I was back to running and training for the next race. Five days after race #2, we celebrated my 37th birthday. It was a short celebration because we had to drive 3 hours to the location of race #3. Waking up and preparing for the race in…

Read More

Five for Friday – 5 pages to review in the CCF Annual Report

Home / Blog / Five for Friday – 5 pages to review in the CCF Annual Report Thanks to your support, the Cholangiocarcinoma Foundation community has continued to grow with its core value of putting patients first. Here are five (5) pages in the 2020-2021 Annual Report you may find of interest. Spotlight on research Spotlight on…

Read More

Monthly Scientific Update – March 2022

Carl Scheitrum spent more than 1,000 volunteer hours in 2021 updating the International Cholangiocarcinoma Patient Registry. Carl’s information technology experience played a crucial role in this project. He helped the CCF team explore the best approaches to make this registry platform more patient-friendly. He also focused on improving the registry output, so researchers can use…

Read More

Racing for Hope Journal Entry 10 – Marathon #2

So, it has been 2 weeks since marathon #2, and I’ve had some time to reflect on it. I need to be transparent. The couple of weeks leading up to this marathon, I just wasn’t feeling it. I didn’t want to run. I was feeling like it was a burden and adding stress on Mandy.…

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 More

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…

Read More

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…

Read More

Racing for Hope Journal Entry 9

Well after the first marathon, it was back to normal life. Training runs, work, doctor appointments with Mandy, the everyday anxiety and fear that something is going to be wrong the next time we are at the doctor’s, and of course raising our little girls. We headed into February and cholangiocarcinoma awareness month with a…

Read More

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.…

Read More

9th Annual Cholangiocarcinoma Foundation Conference features expert speakers, 40 poster presentations from around the world

The 9th Annual Cholangiocarcinoma Foundation Conference begins on Wednesday, Feb. 23rd, 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. Attendees and presenters from around the world represent healthcare, industry, advocacy organizations, patients, caregivers, academia and regulatory bodies. Registration is…

Read More

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…

Read More

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,…

Read More

Five for Friday – 5 Cholangiocarcinoma Educational Videos

Home / Blog / Five for Friday – 5 Cholangiocarcinoma Educational Videos Happy Cholangiocarcinoma Awareness Month! The Foundation co-founded the steering committee of the Global Cholangiocarcinoma Alliance to establish a global voice for cholangiocarcinoma. This alliance works to improve prevention, survival, and the quality of life of patients around the world. Here are five (5)…

Read More

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).…

Read More

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…

Read More

Five for Friday – CCF in the news

Home / Blog / Five for Friday – CCF in the news Raising awareness about cholangiocarcinoma can save lives. The Cholangiocarcinoma Foundation is grateful for its community members who help spread awareness about this rare cancer. Below are five (5) pieces of media coverage about cholangiocarcinoma: Cholangiocarcinoma Foundation on KTVX – ABC4 A Veterans Day…

Read More

Racing for Hope Journal Entry 8 – Marathon #1

Well, this was unbelievable! Leading up to the marathon, we shared our story on our neighborhood Facebook page. I shared about the run and why I was doing it. The support we got on Facebook and while running was amazing! I can’t thank all of those that came out or wrote encouraging words on those…

Read More

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…

Read More

Five for Friday – 5 events to add to your calendar

Home / Blog / Five for Friday – 5 events to add to your calendar The Foundation hopes you are having a Happy New Year! This year, exciting opportunities are happening, including the 9th Annual Cholangiocarcinolma Foundation Conference and more. Here are five (5) events to add to your calendar as the new year begins.…

Read More

Five for Friday – 5 milestones to cherish in 2021

Home / Blog / Five for Friday – 5 milestones to cherish in 2021 Join us in welcoming 2022! It is going to be extraordinary. The Foundation is working on many more collaborative opportunities. Every project, partnership, and initiative the Foundation is involved with centers around patients. Supporting patients to render cholangiocarcinoma a treatable disease…

Read More

Racing for Hope Journal Entry 6 – Christmastime

Alright, let’s get down to business, shall we? After Mandy’s 2 year cancer-versary, we went to Minnesota to see some of her family. While there, we ended up in the emergency room for 10 hours! Mandy had an infection in her drain and bile. She was given antibiotics to help. After we came home, Mandy…

Read More

Five for Friday – Happy Holidays

Home / Blog / Five for Friday – Happy Holidays As 2021 comes to a close, the Foundation recognizes it has come through a year filled with both unique challenges and positive developments. It has been reassuring to know that CCF can count on all of you regardless of what faces us. CCF celebrates the…

Read More

Five for Friday – 5 groups that support the CCF mission

Home / Blog / Five for Friday – 5 groups that support the CCF mission Collaboration is a core value of the Cholangiocarcinoma Foundation and is fundamental to its growth and ability to provide high-quality programs and services to the cholangiocarcinoma community. The Foundation dedicates its efforts in cooperation with other organizations to supporting patients…

Read More

Long-Term Survivor Stories – Heidi Rhea

Heidi Rhea is a long-term survivor. She was diagnosed with cholangiocarcinoma almost 10 years ago. Heidi has always been a cancer advocate, especially with her family history of Lynch syndrome. Heidi is extremely passionate about her advocacy work. She talks about cholangiocarcinoma at every opportunity. Heidi has been a Cholangiocarcinoma Foundation ambassador at health fairs,…

Read More

Seven for Friday – 7 Cholangiocarcinoma Survivor Stories

Home / Blog / Seven for Friday – 7 Cholangiocarcinoma Survivor Stories Cancer can take away a lot of things but never hope. There are so many positive, ongoing developments in cholangiocarcinoma research. Whether you are a patient or know a patient, there is more reason than ever to spread hope in the CCA community.…

Read More

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…

Read More

15th Anniversary of Cholangiocarcinoma Foundation commemorated for #GivingTuesday with a $50,000 match from a donor

The Cholangiocarcinoma Foundation has been celebrating its 15th anniversary throughout 2021 and is continuing to observe the milestone by participating in #GivingTuesday. The global giving movement began in 2013 and is the world’s largest generosity movement. It is also considered by many as the opening day of the giving season.  The generosity of donors to…

Read More

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…

Read More

Mandy’s Perspective

This is my first entry. I was hoping to write an entry here and there to give a different perspective, a patient’s perspective.  I was very fortunate to not suffer from anxiety or depression while growing up. I developed some anxiety after my daughter was born, which I figured was normal. It didn’t interfere with…

Read More

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…

Read More

National Family Caregivers Month

According to the National Alliance for Caregiving, an estimated 65.7 million Americans serve as family caregivers for an ill or disabled relative. Caregivers play an essential role in cancer patients’ care. They provide invaluable physical and emotional support for their loved ones throughout treatment.  Board Member Teresa Delcorso-Ellman said, “Caregiving is one of the most…

Read More

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…

Read More

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…

Read More

Five for Friday – 5 Caregiver Resources

Home / Blog / Five for Friday – 5 Caregiver Resources Celebrated every November, National Family Caregivers Month (NFCM) is a time to recognize and honor family caregivers across the country. The Cholangiocarcinoma Foundation is proud to recognize NFCM and the individuals who support their loved ones through the cancer journey and beyond. Thank you,…

Read More

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.…

Read More