🤚🏻 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…

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🤚🏻 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…

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CCF Celebrates National Cancer Survivors Day

Let’s show the world what life after cancer looks like! On National Cancer Survivors Day®, the Cholangiocarcinoma Foundation will join thousands of people in hundreds of communities throughout the world to celebrate life. This special day is an opportunity for cancer survivors to connect with other survivors, celebrate milestones, and acknowledge the contributions of the families,…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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Virtual Support Groups

The Cholangiocarcinoma Foundation offers support groups and educational webinars to provide an opportunity for people to share personal experiences and feelings, coping strategies, or first-hand information about the disease and treatments. Participants are asked to register for each of the 60-minute virtual sessions. Special guests may lead the variety of discussions that are interactive for…

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Value of Research Studies

A survey is a tool for collecting real-world information. Patients and their caregivers are critical to the success of survey-based research. Participating in survey-based research helps researchers discover new information and identify additional scientific questions. It also, helps them explore potential approaches to address these questions in studies or clinical trials. To learn more about…

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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…

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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…

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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…

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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…

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Five for Friday – 5 CCF Resources

Home / Blog / Five for Friday – 5 CCF Resources The Foundation’s website is full of important educational information for cholangiocarcinoma patients. Here are five (5) resources at your disposal. For more information, please visit the Newly Diagnosed/New to CCF webpage. Specialist Map Biomarker Testing CCF Blog 100 Questions & Answers About Cholangiocarcinoma E-book Discussion…

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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…

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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…

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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…

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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…

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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…

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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…

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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.…

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$550,000 in research grants awarded by the Cholangiocarcinoma Foundation to fund early-career investigators at renowned institutions

Research grants were made to Amsterdam University Medical Center, Duke University, Icahn School of Medicine at Mount Sinai, Johns Hopkins University School of Medicine, Khon Kaen University Thailand, Massachusetts General Hospital Cancer Center/ Harvard Medical School (2), National Institutes of Health, Regents of the University of Minnesota, University of Michigan, and UPMC Montefiore The Cholangiocarcinoma…

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2nd Annual Cholangiocarcinoma Foundation Poster Abstract Awards

3 winners awarded for making significant contributions in research for rare cancer known as cholangiocarcinoma The Cholangiocarcinoma Foundation announced the 2022 Poster Abstract Awards at its annual conference that took place virtually and in-person in downtown Salt Lake City. The award winners were honored for making significant contributions with a visual overview of cholangiocarcinoma research…

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2022 Mark R. Clements Award goes to Jan Meyer, George Riddle and Dr. Mitesh Borad at 9th Annual Cholangiocarcinoma Foundation Conference

Award winners are honored for making significant contributions towards finding a cure for cholangiocarcinoma through advocacy, vision, innovation, collaboration. The Cholangiocarcinoma Foundation announced its 2022 Mark R. Clements Award honorees at its annual conference in Salt Lake City, Utah. The award winners were honored for making significant contributions in supporting patients and rendering cholangiocarcinoma a…

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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…

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Initiative to Map the Cholangiocarcinoma (CCA) Landscape in Europe Will Help Improve Patient Outcomes

Scientists advocate for education programs to raise awareness and improve early diagnosis, survival, and quality of life of CCA patients in the largest and most complete multicenter study of CCA, published in the Journal of Hepatology Bile duct cancer, also known as cholangiocarcinoma (CCA), is a rare cancer often diagnosed only at an advanced stage.…

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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…

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Letter to the editor: Learn about bile duct cancer

February is Cholangiocarcinoma Awareness Month. Never heard of cholangiocarcinoma? You’re not alone. Also known as bile duct cancer, this devastating disease occurs in the body’s bile duct system, which carries bile from the liver to the small intestine. Bile duct cancer is one of the deadliest cancers because symptoms can be overlooked or indicate something…

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Webinar: Elevating Precision Medicine to the Forefront of Every Cancer Journey to Deliver the Right Medicine to the Right Patient

Cancer behaves differently in each person, and there is no one-size-fits-all treatment. Precision medicine makes cancer diagnosis more accurate and improves the ability to predict which treatments will work best. However, for precision medicine to be a real option for every patient with cancer, many more medicines targeting rare genomic drivers, such as NRG1 fusions,…

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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)…

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Cholangiocarcinoma Foundation congratulates AstraZeneca TOPAZ-1, the first Phase III trial to show adding immunotherapy to standard chemotherapy can increase overall survival in advanced biliary tract cancer

On behalf of patients and families impacted by cholangiocarcinoma (bile duct cancer), the Cholangiocarcinoma Foundation congratulates AstraZeneca and its positive results from the TOPAZ-1 Phase III trial. The trial showed Imfinzi (durvalumab) in combination with standard-of-care chemotherapy resulted in improved overall survival (OS) versus placebo plus chemotherapy in patients with advanced biliary tract cancer (BTC).…

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Volunteers make big strides with raising awareness, funding research for the Cholangiocarcinoma Foundation

In 2021, volunteers for the Cholangiocarcinoma Foundation (Foundation) made big strides in raising awareness and funding research to render the lethal bile duct cancer treatable. Supporting and managing the volunteers was recently recognized by the Utah Nonprofit Association that awarded the Foundation with its credential badge for volunteer management. “We see this achievement as the…

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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…

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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…

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Webinar: “The PERIO-02 Trial – Enabling Immunotherapy for Intrahepatic Cholangiocarcinoma”

In this webinar, Steven C. Katz, M.D., FACS, Chief Medical Officer at TriSalus Life Sciences, leads a review of the Pressure-Enabled Regional Immuno-Oncology (PERIO-02) clinical trial for adults with intrahepatic cholangiocarcinoma and hepatocellular carcinoma, the most common primary liver tumors. Dr. Katz is joined by Venu Pillarisetty, M.D., Professor of Hepatopancreatobiliary Surgery at the University…

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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.…

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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…

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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…

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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…

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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…

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Long-Term Survivor Stories – Heidi Rhea

A short write-up about Heidi Rhea’s work as a CARE Team member, highlighting her most recent efforts at a Livewell local health fair. 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…

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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.…

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Long-Term Survivor Stories – Robert Bickel

Working out was something of a side-hustle for me the last three years. I used it as motivation to quit smoking and set the stage for the next chapter of my life. With two daughters in college that were not too far off-major milestones and such. Despite that vice, I maintained a fairly healthy lifestyle…

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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…

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Long-Term Survivor Stories – Matt Reidy

Hello. I’m Matt Reidy. I live in Richmond, VA. I’m a retired IT executive. I’m also married with four children, now age 12 through 25. I enjoy woodworking, sailing, and water sports. MY STORY I was diagnosed in December 2013 with stage II perihilar cholangiocarcinoma. I was devastated at diagnosis when I learned there is…

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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…

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Five for Friday – 5 ways to prepare for the conference

Home / Blog / Five for Friday – 5 ways to prepare for the conference Registration for the 9th Annual Cholangiocarcinoma Foundation Conference is open! The annual conference takes place the week of Feb. 23-25, 2022. Join more than 500 patients, caregivers, scientists, researchers, and healthcare providers from around the globe to learn about the latest in…

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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…

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Giving Tuesday 2021

This year was an incredible success, because of you, we raised more than $150,000! Last year on Giving Tuesday, people came together to raise more than $2.5 billion to support the causes they care about. This year, you can participate in #GivingTuesday by sharing a UNselfie, which tells the world why it’s important to give…

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Patient Scholarships for our 2022 Annual Conference

It is with great pleasure the Cholangiocarcinoma Foundation announces it is giving patient scholarships for its 9th Annual Cholangiocarcinoma Foundation Conference taking place February 23-25, 2022, in Salt Lake City. The non-transferrable scholarships for patients cover registration, hotel, air, and ground transportation. The Foundation is thrilled to award scholarships this year because 2020 and 2021…

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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,…

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Long-Term Survivor Stories – Arlene Dworetsky

Hi, my name is Arlene Dworetsky. I’m from Glastonbury, CT, originally from Hartford, CT. I’m a retired public elementary school teacher with more than 30 years of teaching experience. Currently, I’m a reading/math tutor for a public 3rd-5th grade elementary school in my area. I have a husband, two sons, and a beautiful baby grandson.…

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Long-Term Survivor Stories – Christy Landon

My name is Christy Landon. I grew up in the northeast Ohio area and currently live in Mansfield with my husband, Troy. We have four adult children: Conner, Alexis, Logan, and Alec. They are all attending college. I also have three grandchildren. MY STORY Prior to diagnosis, I was a family and consumer sciences teacher…

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Racing 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,…

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GCA Webinar: Why better coding is needed

There is currently a lack of cholangiocarcinoma-specific educational resources that are designed to support the adoption of ICD-11 among healthcare professionals. As a result, the Global Cholangiocarcinoma Alliance (GCA) is organizing an ICD-11 webinar titled “An overview of CCA: Why better coding is needed.”

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Racing 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…

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Why 21 Miles of Hope?

Jonathan Whiting - Family Photo

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…

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Racing 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…

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Webinar: 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…

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Shaun Hope: ‘It Could Be Worse’

Shaun Hope was diagnosed with extrahepatic cholangiocarcinoma in August 2019. He faced his diagnosis with courage and his famous mantra, “It could be worse.” Shaun was a geek at heart. Even while struggling with fatigue and pain, he worked as long as he was able to. He built an arcade, purchased a 3-D printer to…

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Team Sarah Newton

Sarah Newton of Galena, Illinois has been dealing with bile duct cancer since her diagnosis in July 2020. She has endured four-plus months of chemo, two procedures involving implanting Y90 in both lobes of her liver and is currently taking gene therapy medication.

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2nd Annual Moving for the Cure Recap

TeamCCF sponsored its 2nd Annual Moving for the Cure, July 18 – 24. Families and individuals accepted the challenge to raise at least $200 and perform any physical movement during that week in July. In the end, the Moving for the Cure participants and sponsors raised more than $96,000!

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Bidding for the Cure

Thanks to everyone that participated! Help fund research that will move us closer to a cure. To celebrate the Cholangiocarcinoma Foundation’s 15th Anniversary, and to support our volunteer committee’s pledge to raise $150,000 to fund critical research into cholangiocarcinoma, we are holding our first-ever virtual silent auction – Bidding for the Cure. We are auctioning…

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Whispers Over My Shoulder

Excerpt from the ASCO Post, by Mairéad Geraldine McNamara, MB, PhD.  When I interviewed for my current post as a first-time consultant in medical oncology in the United Kingdom, I was asked about my 5-year career plan. I remember some detail of my reply, but I don’t think it even remotely encompassed the depth of insight…

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Journey of Hope: Day 41

Well, here I am on the eve of the conclusion of my 15,000 mile Journey of Hope. I’ve checked off all the boxes of the milestones I originally set out to achieve. At least I thought I had…

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