Trials, Targeted Agents Often Lead to Financial Toxicity From CCA

Clinical trials and targeted agents do not appear to affect health care–related quality of life, however. July 27, 2022 — People with cholangiocarcinoma (CCA) who enroll in a clinical trial or receive targeted therapy suffer a significant financial burden, but their health care–related quality of life (QOL) is unaffected, according to a new report published in Journal of…

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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…

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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…

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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…

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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…

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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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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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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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$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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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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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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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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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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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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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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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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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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Journey of Hope: Day 34

“Toto, I have a feeling we’re not in Kansas anymore!” I had been waiting to say that through the first 41 states I visited. Now that I’m in NE., it’s officially stated!

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Journey of Hope: Day 32

Today, I made my way through two more towns named Hope; one in OH., and one in IN. I came to the realization that I’ve been in five small towns named Hope over the past four Sunday’s.

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Journey of Hope: Day 31

As I get into the last 5,000 miles of my Journey of Hope, I’m excited to see what lies ahead. This includes visits with warriors, caregivers, doctors, spontaneous encounters with the “unknowing”, and continuing to experience the vastness of our country.

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Journey of Hope: Day 30

Happy, Happy Valley! This is my second visit to Happy Valley in the past four weeks. The difference is the first time was in OR., and tonight I’m in PA; about 2,670 miles away.

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Journey of Hope: Day 29

Headed east from Weston, WV, to Sparta, NJ, for a night of rest before starting the final 1/3 of my journey Friday afternoon. It was another beautiful day traveling through WV, western MD, PA, and back into NJ.

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Journey of Hope: Day 27

“Pushing a rock, pushing a rock”. As part of my journey I’m leaving a trail of Hope rocks that Linda painted across the country; in each of the 48 states, and in towns named Hope.

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Journey of Hope: Day 23

Anyone know where the tallest cast iron statue in the U.S. is located, and what its’ name is? As I approached my first meeting location of the day, in Birmingham, AL, I observed a significant statue on a pedestal on a high point in the city.

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Journey of Hope: Day 22

Have you ever had one of those days when you realize how finely tuned our lives are? That is until a few minor quirks get in the way. Today was one of those days for me.

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Journey of Hope: Day 21

As it’s the 15th anniversary of the Cholangiocarcinoma Foundation, many people now know that I’ve incorporated the number 15 into my journey in a variety of ways.

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Journey of Hope: Day 17

After a two-minute visit to the beach for a quick photo of the Atlantic Ocean, I left Ogunquit, ME @ 6:30 a.m., and headed two hours south to Holliston, MA, and the home of Kim Balkus.

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Journey of Hope: Day 15

I don’t want to jinx myself, however, the Journey just keeps getting more meaningful to me by the day! Now I’m starting to think how can it be possible that I only have 9,375 miles to go?!

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Journey of Hope: Day 14

Remember the movie Cast Away starring Tom Hanks and his companion Wilson, the soccer ball? Well, I had one of those episodes today, when Mike O’Langio my Mutations Matter photo bud seemed to have disappeared.

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Journey of Hope: Day 13

What an inspiring day! My first stop this morning was in Akron, OH, where I was met by a “sea of green” at the home of Lisa (warrior and mentor) and David Craine.

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Journey of Hope: Day 12

I have to admit, this was a long day. As I planned the journey, I knew that was going to be the case, however, I didn’t plan on the hotel story at the end of the day.

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Journey of Hope: Day 11

Wow, another eventful day! The day started with me dropping Linda off at O’Hare Airport for her journey home to NJ, so as to be with our grandson, Austin, this week for “bus duty”.

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Journey of Hope: Day 10

It was a beautiful, cool, cloudless morning when Linda and I departed Rochester, MN, today. Our first official stop was about 275 miles away, fairly close to Milwaukee.

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Journey of Hope: Day 9

Departing from Watertown, SD, we headed in a southeasterly direction to Hope, MN., over a variety of roads, including interstates, two-lane state and county roads, plus an added bonus of dirt! It’s amazing what supposed shortcuts GPS will produce at times!

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Journey of Hope: Day 8

As we departed Dickinson, ND, this morning, we were greeted with a windy 35°, and snow showers! Quite a difference for those in New England talking about how hot it is at 90°. Driving east on I-94 our first stop was to see Salem Sue, the world’s largest Holstein cow!

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Journey of Hope: Day 7

We started our A.M. drive in Livingston, MT, and proceeded to Billings, MT. to pick up Melinda Bacchini, a CC Warrior who is also on the staff of the foundation. Melinda is Director of Patient Advocacy and an 11½ year survivor.

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Journey of Hope: Day 6

We saw a lot of gorgeous scenery today, including Sandpoint and Hope, ID, as well as East Hope, and believe it or not, an area known as Beyond Hope! The beauty continued into MT. with diverse scenery and weather conditions along MT Route 200 and I-90 eastbound before the pouring rain started in Anaconda, MT.

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Journey of Hope: Day 5

This morning, Linda and I had the opportunity for a meet-up outside the Fred Hutch Cancer Center in Seattle. Our mission was to thank doctors who are improving the lives and finding a cure, for cholangiocarcinoma patients, now and in the future.

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Journey of Hope: Day 4

This morning Linda and I had the opportunity to meet in the Vancouver, WA area, with one of my ex-colleagues, his wife, and daughter, Sara. Two years ago, Sara was a recipient of the Sarah Fleischer Bennett memorial scholarship.

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Journey of Hope: Day 3

Day three of the JoH was another day full of fulfilling visits, beautiful scenery and variations in weather, including rain, heavy fog on the curvy roads of the Cascades, then sunshine.

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Journey of Hope: Day 2

Day two of our journey had Linda and I heading west from Twin Falls to Boise, ID for a scheduled meet up with Cindy Thomas of the Cholangiocarcinoma Foundation staff, and Steven Banks, a local cholangiocarcinoma warrior.

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Journey of Hope: Day 1

After a great send off from Ken Garff Honda, Orem, UT, Linda and I began our 15,000 mile journey. With the foundation celebrating its’ 15th anniversary, our first duty was to commence the drive on I-15 northbound.

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Cheer Dave On!

May 20th was an exhilarating day for CCF. Friends, family, and other locals gathered together with signs and balloons as Dave Fleischer left on his 15,000 mile Journey of Hope in honor of their daughter Sarah.

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Bundles of Hope

Dear Friends, This year CCF is celebrating 15 years of providing love, comfort, and hope to the cholangiocarcinoma community. We are honored to serve as Co-Chairs of the 15th Anniversary Steering committee. We hope you have been enjoying the monthly “What’s Your 15?” opportunities to remember, reflect and give back to this community we have…

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