Blog Post
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 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 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 More3rd 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🤚🏻 Five for Friday – 5 Questions to Ask Your Doctor About Biomarker Testing + 2 Biomarker Stories
Home / Blog / 🤚🏻 Five for Friday – 5 Questions to Ask Your Doctor About Biomarker Testing + 2 Biomarker Stories Knowing what to ask your doctor after a cholangiocarcinoma diagnosis isn’t always easy. CCF is here to help with five questions you can ask regarding biomarker testing and new videos to explain IDH mutations: Can…
Read MoreRacing 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 MoreLong-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 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 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 MoreRacing for Hope Journal Entry 18
Mandy texted me the cancer is back…
Read MoreJourney 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 MoreSocial 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 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 MoreGovernor’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🤚🏻 Five for Friday – 5 Ways to Support 21 Miles of Hope
Home / Blog / 🤚🏻 Five for Friday – 5 Ways to Support 21 Miles of Hope In 2016, Jonathan Whiting lost his wife, Lori, to cholangiocarcinoma (CCA). He is swimming across the English Channel in July to honor her memory and raise awareness and research funds for CCA. Tomorrow, he is swimming 12 miles…
Read MoreGlobal 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 MoreRacing 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 More5 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 MoreHappy Retirement to 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 MoreBill 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 MoreMonthly 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 MoreRacing 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 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 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 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 MoreInnovative ‘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🤚🏻 Five for Friday – 5 ways you can participate in Campaign for the Cure
Home / Blog / 🤚🏻 Five for Friday – 5 ways you can participate in Campaign for the Cure Here are five ways you can participate in the Campaign for the Cure: Learn More Campaign for the Cure (#C4C2022) launched this week and runs for the entire month of May. You can learn more about the campaign…
Read MoreRacing 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 MoreMonthly 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🤚🏻 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 MoreEnjoy 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 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 MoreFive 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 MoreAnnual 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 MoreCalling 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 MoreFive 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 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 MoreRacing 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 MoreMonthly 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 MoreThe Sugar Shack
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 MoreFive 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 MoreRacing 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 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 MoreFive 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 MoreRacing 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 MoreFive 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 More60-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 MoreRacing 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 MoreFive 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 MoreMonthly 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 MoreRacing 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 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 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 MoreRacing 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 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 More9th 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 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 MoreFive for Friday – 5 ways you can put your advocacy to work for World CCA Day
Home / Blog / Five for Friday – 5 ways you can put your advocacy to work for World CCA Day World CCA Day is an international effort to raise much-needed awareness of bile duct cancer. Cholangiocarcinoma is increasing globally and the Foundation is acting with urgency with a concerted effort to support patients and…
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 MoreFive 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 MoreFive for Friday – 5 ways you can get involved in Cholangiocarcinoma Awareness Month
Home / Blog / Five for Friday – 5 ways you can get involved in Cholangiocarcinoma Awareness Month In February, the Foundation invites everyone to participate in Cholangiocarcinoma Awareness Month, with February 12th marking World Cholangiocarcinoma Day, also known as World CCA Day. As part of February’s events, the Foundation will continue the Light It…
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 MoreFive for Friday – 5 takeaways from GI ASCO 2022
GI ASCO is a global symposium that delivers the latest and most innovative science, research, and multidisciplinary educational content in the GI cancers field.
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 MoreFive 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 MoreRacing 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 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 MoreFive 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 MoreRacing for Hope Journal Entry 7 – Racing for hope after Christmas
Well, we missed Christmas and have spent a week in the hospital. The whole time I was so frustrated with the nurses and doctors. I felt the entire time no one would do anything for us. I know they are overworked and short-staffed, and it’s not a job that I would ever want. It was…
Read MoreFive 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 MoreRacing 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 MoreFive 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 MoreFive 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 MoreLong-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 MoreRacing for Hope Journal Entry 5 – 2 years after diagnosis
Sorry, it’s been a little bit since I updated you guys on everything but here we are back at it again! So this past Sunday was 18 miles on my training plan, man, was it tough! I got it done in just under 3 hours but one of the reasons it was so difficult was…
Read MoreSeven 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 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 More15th 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 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 MoreMandy’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 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 MoreRacing for Hope Journal Entry 4
Video Blog for Week 5
Read MoreNational 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 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 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 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 MoreFive 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 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 MoreRacing for Hope Journal Entry 3
Week 3 and I am already making big strides in the training! I’m getting faster, which is really cool. Hopefully, the miles on my feet will help with the endurance. We are making big strides on the fundraising as well! $1,767 already raised and the year hasn’t even started! If you are reading this, donated,…
Read MoreFive for Friday – 5 industry projects that support our CCA community
Home / Blog / Five for Friday – 5 industry projects that support our CCA community The Foundation’s core values are patients first, collaboration, innovation, and urgency. We want to share a few projects our industry partners are working on to support our entire community: Elevation Oncology – Podcast on biomarkers, new tests and new…
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 MoreFive for Friday – 5 Things You Can Do to Participate in Awareness Month
Visual displays during Cholangiocarcinoma Awareness Month and sharing information about the causes, symptoms, and risk factors for cancer on social media can help save lives.
Read MoreWebinar: Precision Medicine in Cholangiocarcinoma: How Comprehensive Molecular Profiling Identifies Personalized Treatment Options for Patients
Between 2018 and 2021, several targeted drug therapies achieved FDA approval for use in cholangiocarcinoma based on specific gene alterations identifiable by next-generation sequencing.
Read MoreRacing for Hope Journal Entry 2
So, we are into week 2 of training! This past weekend, I did a Spartan super race on Saturday. On Sunday, I got to run a Spartan sprint with my incredible fighter wife and my reason for racing for hope. I couldn’t be prouder of Mandy. She absolutely killed the course! Every obstacle she had…
Read MoreWhy 21 Miles of Hope?
How I met Lori and Life up to Diagnosis I was playing music in a club at a happening nightspot, when one of my very best friends named, Debbie, brought out a group of friends to see me. They were all my friends but there was someone in the group I had never met. That…
Read MoreFive for Friday – 5 items you can purchase to help support CCF’s anniversary
Home / Blog / Five for Friday – 5 items you can purchase to help support CCF’s anniversary On Jan. 21, 2021, CCF introduced a year-long celebration of its 15th Anniversary. The CCF Awareness Store recently added new 15th anniversary items. Here are five (5) items you can purchase to help support the anniversary and…
Read More2 New mentorship programs via partnership with ICRN/ENS-CCA to support, advise junior researchers in their career choices
The Foundation’s International Cholangiocarcinoma Research Network (ICRN) and the European Cholangiocarcinoma Network (ENS-CCA) created two new mentoring programs…
Read MoreRacing for Hope Journal Entry 1
Hello! I don’t really know how to start this, but here we go! If you are reading this, I’m assuming you know why I’m running 12 marathons in 12 months. Well, I just finished the Chicago marathon! It was my second ever marathon. I had the privilege to run it with teamCCF! It was such…
Read MoreFive for Friday – 5 ways you can participate in the Turkey Trot
CCF and TeamCCF are thrilled to announce our Second Annual virtual Turkey Trot. This Thanksgiving we want you to move for a good cause.
Read MoreFive for Friday – 5 on one-of-a-kind items in the CCF Bidding for the Cure Auction
Thank you to everyone who has supported CCF Bidding for the Cure. We wanted to remind you that the virtual auction is still open until tomorrow, Oct. 2nd at 9:00 p.m. (ET).
Read MoreRare Cancer Day is supported by Cholangiocarcinoma Foundation with video series called ‘Patient Voices’
Any cancer diagnosis is frightening but when it is rare cancer with few treatment options, the diagnosis can be especially devastating.
Read MoreFive for Friday – 5 ways you can support CCF Bidding for the Cure
The inaugural CCF Bidding for the Cure virtual auction starts TODAY, Sept. 24th, at 3:00 p.m. (ET).
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 MoreEarly-stage cancer research funding supported by inaugural virtual auction by Cholangiocarcinoma Foundation
Cholangiocarcinoma patients and scientists need help generating funding for research and treatment of early-stage cholangiocarcinoma, a rare but lethal bile duct cancer. To help in that effort…
Read MoreWebinar: Personalizing cancer treatments with the PARIS® Test for cholangiocarcinoma patients
Subscribe to our YouTube Channel Title: Personalizing cancer treatments with the PARIS® Test for cholangiocarcinoma patients Recorded: Thurs., Sept. 23, 2021 4:00pm (Eastern) Presented by: SEngine Rare and aggressive cancers, such as Biliary Tract Cancers (BTCs), have a significant unmet need that current approved therapeutics do not meet. Conventional clinical trial-based approaches have been ineffective…
Read MoreFive for Friday – 5 Ways to Support the Newly Diagnosed Program
CCF officially launched its Newly Diagnosed/New to CCF program on Monday, Sept. 13th, to support patients and caregivers following a cholangiocarcinoma diagnosis.
Read MoreNew cancer program launched by Cholangiocarcinoma Foundation to connect patients, caregivers with essential resources
The Cholangiocarcinoma Foundation (CCF) is proud to announce the launch of its Newly Diagnosed/New to CCF program to support patients and caregivers following a cholangiocarcinoma (bile duct cancer) diagnosis.
Read MoreRare cancer diagnosis for WTC responders, survivors 20 years later
The terrorist attacks on Sept. 11, 2001, that led to the destruction of the World Trade Center and the loss of thousands of lives was an environmental disaster with long-lasting consequences. The dust and toxins that dispersed into the air and covered lower Manhattan set into motion a health crisis that will only accelerate in…
Read MoreFive for Friday – 5 Videos from CCF Research Advocates
These volunteers spend countless hours reviewing patient materials, giving feedback on clinical trial design, and sharing their knowledge to help advance the science and better the lives of cholangiocarcinoma patients.
Read More3rd Annual A Hike for Jill. A Hike for a Cure
In memory of his wife, Jill, Kevin Coyle hosted the 3rd annual “A Hike for Jill. A Hike for a Cure.”
Read MoreFive for Friday – 5 CCF Collaborations with Industry
Partnership and collaboration are vital to our mission to find a cure and improve the quality of life for those affected by cholangiocarcinoma.
Read MoreCholangiocarcinoma Foundation CEO named as a finalist in Cancer Community (C2) Awards
Cholangiocarcinoma Foundation CEO and Founder Stacie C. Lindsey has been named a finalist of the Cancer Community (C2) Awards in the category of C2 Catalyst Change.
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