🤚🏻 Five for Friday – National Children’s Grief Awareness Day

Home / Blog / 🤚🏻 Five for Friday – National Children’s Grief Awareness Day Yesterday, November 17, was National Children’s Grief Awareness Day. The Cholangiocarcinoma Foundation recognizes the children of many of our patients who may also be experiencing a wide range of emotions due to their family member’s diagnosis. Click these links to learn…

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🤚🏻 Five for Friday – Five Caregiver Perspectives

Home / Blog / 🤚🏻 Five for Friday – Five Caregiver Perspectives November is National Family Caregiver Month (NFCM)! The Cholangiocarcinoma Foundation recognizes NFCM as a time to celebrate the contributions of caregivers. We are pleased to share five Caregiver stories this week: Caregiver Perspective – Jill Neubauer Caregiver Perspective – Laura Lee Caregiver Perspective…

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Patient Engagement and Cancer Genome Sequencing (PE-CGS) “Cancer Moonshot” Program

The research team at Washington University School of Medicine and the Alvin J. Siteman Cancer Center is partnering with the Cholangiocarcinoma Foundation to launch the National Cancer Institute-funded Patient Engagement and Cancer Genome Sequencing (PE-CGS) “Cancer Moonshot” program. This program provides an opportunity for cholangiocarcinoma patients, their caregivers, and advocates to participate in this research…

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🤚🏻 Five for Friday – Meet Five CCA Physicians

Home / Blog / 🤚🏻 Five for Friday – Meet Five CCA Physicians The Cholangiocarcinoma Foundation realizes that the fastest way to advance research is by working together. As the leading advocate for patients, the Foundation is uniquely positioned to bring together world-renowned clinicians, researchers, and physicians to achieve a common goal: finding a cure.…

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🤚🏻 Five for Friday – Meet 5 CCA Scientists

Home / Blog / 🤚🏻 Five for Friday – Meet 5 CCA Scientists Finding a cure for a disease as rare and complex as cholangiocarcinoma demands creative solutions. When clinicians, scientists, and researchers collaborate, their experience and knowledge advance research. Meet five cholangiocarcinoma scientists: Sumera I. Ilyas, M.B.B.S. Lewis Roberts, Ph.D Lipika Goyal, M.D. Juan…

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Living with #CCAHope

At the 9th Annual Cholangiocarcinoma Foundation Conference, the communications team introduced a new social media campaign, “Living with #CCAHope.” CCF has been sharing stories of hope from the entire cholangiocarcinoma (CCA) community throughout the year and will continue to do so throughout 2023. Since the announcement of this campaign, several individuals have shared how they…

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Collaborative Research Groups

CCF has formed collaborative groups that work to achieve its mission to find a cure and improve the quality of life for cholangiocarcinoma patients. Each of them exemplify the organization’s core values: Patients First Patients First Collaboration Collaboration Innovation Innovation Innovation Urgency Learn more about the five groups that working for you. The Scientific and…

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🤚🏻 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…

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🤚🏻 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…

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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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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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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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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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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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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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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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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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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 – 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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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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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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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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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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Cholangiocarcinoma Foundation celebrates FDA’s Breakthrough Therapy Designation for Zanidatamab in Patients with Biliary Tract Cancer

The Cholangiocarcinoma Foundation (CCF) celebrates the November 30, 2020 FDA breakthrough therapy designation for Zanidatamab in patients with previously-treated HER2 gene-amplified biliary tract cancer. A HER-2 or Human Epidermal Growth Factor Receptor 2 mutation occurs when cancer causes the HER-2 cell to produce too much protein, resulting in cells dividing and growing too fast. HER-2…

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Cholangiocarcinoma Foundation celebrates FDA’s Acceptance Of New Drug Application For Infigratinib For The Treatment Of Cholangiocarcinoma

On behalf of patients and families impacted by cholangiocarcinoma, the Cholangiocarcinoma Foundation (CCF) celebrates the December 1, 2020 FDA acceptance of Infigratinib. QED Therapeutics, is a subsidiary of BridgeBio, which is focused on precision medicine for FGFR-driven cancers. Infigratinib is an oral FGFR1-3 selective inhibitor, for individuals with cholangiocarcinoma, or cancer of the bile ducts.…

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Stacie Lindsey to Receive Luminary Award for Advances in GI Cancers

Stacie C. Lindsey, Chief Executive Officer & Founder of the Cholangiocarcinoma Foundation is one of five leading individuals who will receive a Luminary Award in GI Cancers from OncLive and The Ruesch Center at their virtual 11th Annual Ruesch Symposium. The award winners are being honored for their lifetime achievements focused on finding cures for…

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#GivingTuesday 2020

Giving is not just about making a donation, it’s about making a difference! Last year on Giving Tuesday, people came together on Facebook to raise more than $120 million 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…

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CCF wants you to join it’s first ever Turkey Trot

Join the Cholangiocarcinoma Foundation’s first Virtual Turkey Trot Run/Bike/Walk! TeamCCF and the Cholangiocarcinoma Foundation are hosting their 1st Annual Virtual Turkey Trot. It is open to different physical activities such as running, biking, or walking. The goal is to encourage participation in healthy and fun physical activity while raising funds for cancer research. Participants choose…

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Five for Friday – 5 of our latest blog posts

The Cholangiocarcinoma Foundation’s Blog has been home to a variety of content ranging from patient perspectives to updates on medical advancements. Patients share news and personal anecdotes, and the blog also serves as a resource for you to familiarize themselves with the Foundation.

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2021 Cholangiocarcinoma Annual Conference to be held March 31 Through April 2, 2021

Drs. Bridgewater and Meric-Bernstram to Chair The 8th Annual Cholangiocarcinoma Foundation Conference will be held virtually March 31st- April 2nd, 2021. John Bridgewater, MD, PhD of the UCL Cancer Institute, London and Funda Meric- Bernstram, MD of MD Anderson Cancer Center will Co-Chair the event. Dr. Bridgewater specializes in gastrointestinal oncology, with a particular interest…

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Should I get a Second Opinion?

Mike Shane Memorial Fund (MSMF) just recently turned one! In the past year MSMF has helped 7 cholangiocarcinoma patients get a second opinion. All donations they receive go to second opinions.

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Rare Cancer Day 2020

Don’t forget to mark your calendar for Rare Cancer Day, on September 30th. The Cholangiocarcinoma Foundation (CCF) partners with NORD every year to join together and raise awareness for rare cancers, specifically cholangiocarcinoma.

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Grateful Patient Day 2020

On September 7th, 2020 the Cholangiocarcinoma Foundation (CCF) participated in Grateful Patient Day. Each year, Grateful Patient Day spotlights stories of gratitude for doctors, nurses, researchers, medicines and procedures that help patients.

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Five for Friday – 5 Resources to Help Navigate Depression.

During our 2020 Annual conference, Incyte shared the results from a 700 patient survey. The survey found that the quality of life for patients with cholangiocarcinoma is heavily impacted by a host of symptoms and side effects, including depression that may be severe.

This week we’d like to offer 5 reliable resources to help navigate through depression.

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Five for Friday – 5 fundraising events

We are SO thankful for all of our volunteers who work tirelessly to support CCF in any way they can. “One of the greatest gifts you can give is your time.” This week we would like to highlight 5 events that our amazing volunteers put together.

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Five for Friday – 5 highlights from the Annual Conference

Each week, we’re going to offer five tips that will help you stay educated, informed and hopeful about all things cholangiocarcinoma.

Our 2020 Annual Conference was unforgettable! We would like to extend our sincerest thanks to all those who joined us online during the 2020 Virtual Annual Conference. Over 1,600 individuals from 49 states and 44 countries registered, which is 3x more than our previous conference!

During the conference, we presented exciting new research collaborations, programs, and more crucial information that will continue to move us toward better treatment options for patients.

If you missed it, we’d like to share 5 highlights from the conference.

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The 2020 Annual Conference was a Success!

We would like to extend our sincerest thanks to all those who joined us online during the 2020 Virtual Annual Conference on July 22-24th. More than 1,600 individuals from 49 states and 44 countries representing healthcare, industry, patient advocacy organizations, patients, caregivers, academia, and supporters logged in for 3 days of connection through inspirational stories…

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Cholangiocarcinoma Foundation Consortium Moves to Clarify and Promote Consistent Use of Common Terms for Biomarker and Germline Genetic Testing

Improved Communication Is Vital Between Patients and Providers About Testing Needs WASHINGTON, DC (July 7, 2020) — A LUNGevity Foundation-led consortium of 41 leading patient advocacy organizations, professional societies and industry partners has published a white paper detailing recommendations for the use of testing terminology in precision medicine for patient education throughout the cancer community.…

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Five for Friday – 5 ways you can get involved with Moving for the Cure

Each week, we’re going to offer five tips that will help you stay educated, informed and hopeful about all things cholangiocarcinoma.

CCF is holding it’s first athletic fundraiser: Moving for the Cure! Enjoy any activity, anywhere, and raise money for the Cholangiocarcinoma Foundation. All ages and athletic abilities can participate.

This week we present 5 ways you can get involved with Moving for the Cure.

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