Blog Post

It’s time to celebrate! July 2021 marks the creation of the 500th mentor/mentee relationship with CholangioConnect since its beginning in July of 2017.

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…

Keeping you informed and educated about cholangiocarcinoma is a priority for us at the foundation.

Join CCF’s 2nd Annual Moving for the Cure! Enjoy any activity, anywhere, and raise money for the Foundation. All ages and athletic abilities can participate.

This week, we are featuring five (5) events that the cholangiocarcinoma community has put together to engage with others, be proactive in facilitating awareness, and raise money for the Cholangiocarcinoma Foundation.

It is with extreme pleasure that we announce Dave Fleischer is near the end of his 15,000-mile Journey of Hope. On Wednesday, June 30th, he will make his way back to Utah and be greeted with a welcome back party at Ken Garff Honda Orem.

The American Society of Clinical Oncology Gastrointestinal Cancers Symposium (GI ASCO) recognizes the important role clinical trials play in cancer advancements, especially GI cancers.

Cholangiocarcinoma Awareness Matters! This year nearly 10,000 people in the United States and many more across the world will be diagnosed with CCA, many in a late stage.

In anticipation of National Cancer Survivors Day on June 6th, we would like to recognize several friends of the foundation who have been willing to share their survivor stories.

TeamCCF would like to take this opportunity to engage those who want to fundraise for the Foundation in a fun and positive way with a fitness component.

This is an important milestone for this community and specifically for patients with CCA harboring an FGFR2-fusion.

Our social media platforms allow us to tell your stories. Messages can help increase awareness, promote programs and initiatives and spread the word about our mission.

Each week we bring you the latest information and updates relevant to the CCF community through our live webinars and other events.

Join a vibrant community of donors helping to find a cure for cholangiocarcinoma and improving the lives of patients and families.

This is an important milestone for this community and specifically for patients with an IDH1 mutation.

While April is set aside to focus gratitude for volunteers, we recognize and appreciate their contribution every day.

Annual Conference sessions are now available on our YouTube channel and website.

Our 15th Anniversary volunteer committee has pledged to raise $150,000 to help fund critical research into this deadly disease.

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…

Join us as we explore our roots and applaud the many individuals and organizations who have contributed to our growth and impact.

If you haven’t taken the surveys, please take a few moments to complete them. These surveys are very important in our planning for the conference.

CCF has awarded the 6th cycle of funding for its Research Fellowship Program.

The Cholangiocarcinoma Foundation (CCF) announced the inaugural 2021 Poster Abstract Awards at its virtual annual conference.

The Cholangiocarcinoma Foundation (CCF) announced the 2021 Mark R. Clements honorees at its virtual annual conference.

We are writing to request your participation in a research study. The study is being conducted through the Winship Cancer Institute at Emory University in collaboration with the Cholangiocarcinoma Foundation and Ciitizen.

We encourage you to login before the conference starts to familiarize yourself with the platform. This week we are sharing 5 tutorial videos to help you learn your way around the platform.

CCF’s 8th Annual Conference is around the corner! We encourage you to use hashtags to help friends, family and colleagues know what is happening at this conference.

CCF’s 8th Annual Conference is 19 days away! Join more than 1,000 patients, caregivers, scientists, researchers, and healthcare providers from around the globe.

Awareness Month 2021 has been the most impactful yet! Thank you to all those that participated in shining a light on cholangiocarcinoma this year.

“This is an important milestone for this community and specifically for patients with an IDH1 mutation.”

Our conference is jam-packed with fun games, trivia and more. We’ve created several ways for you to feel involved and connect with other CCF friends.

CCF has partnered with the newly formed Japan Cholangiocarcinoma Association to serve patients, raise awareness, fund and create a network for research and healthcare providers in Japan and throughout Asia.

We teamed up with Mill Pond Communications, with support from QED Theraputics and Bayer to create several patient-friendly videos explaining important topics about CCA.

Josh Bloomfield was a top blues drummer and vocalist who contributed so much to his 41 years of life. Although short in stature, his large personality and musical talents made a splash in the Capital Region.

World Cholangiocarcinoma (CCA) Day is an international effort to raise much-needed awareness of CCA. This disease is increasing in incidence globally and we believe collaboration is crucial to move forward towards a cure.

This month, we invite everyone to participate in Cholangiocarcinoma Awareness Month. Let’s work together to raise much-needed awareness by shining a light on CCA throughout the world.

CCF plans to have some fun during the conference! We are excited to announce our second annual Music Video Contest and this year’s winning song.

The American Society of Clinical Oncology Gastrointestinal Cancers Symposium (GI ASCO) recognizes the important role clinical trials play in cancer advancements, especially GI cancers.

In 2021, the organization will celebrate its rich history and the many individuals and organizations who have contributed to the organization’s growth and the impact it has made in the cancer community.

GI ASCO is a global symposium that delivers the latest and most innovative science, research, and multidisciplinary educational content in the GI cancers field.

Collaboration is a core value at CCF and is fundamental to the Foundation’s growth and ability to provide high-quality programs and services to the CCA community.

You are the future of research, and we want you to know that your validated data matters. When you request your health records and share your data with Ciitizen, you are helping us find a cure for cholangiocarcinoma (CCA).

We hope you had a Happy New Year! Exciting things are happening at Cholangiocarcinoma Foundation (CCF) this year, including celebrating our 15th Anniversary and more.

Please help us participate in CCF’s Light It Green For CC project! We are excited to grow this campaign in 2021.

I am a 40 year old mother of two, 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.

“Let food by thy medicine and let medicine be thy food”.  Hippocrates is thought to be the source of this quote, but Dr. William Li, world-renowned physician, scientist, and author, reiterated this concept during his keynote speech at the Cholangiocarcinoma Foundation’s Annual Conference on August 4, 2020.  Dr. Li authored a recently published book entitled,…

Matt Reidy was diagnosed in 2013 with stage II perihilar CC. Matt is from Richmond, VA, is married with 4 children ages 12-25. Matt is a retired IT Executive and enjoys wood. working, sailing, water sports.

As 2020 comes to a close, there are a number of opportunities to support the work of the Cholangiocarcinoma Foundation. Your Year-End Giving can make a long-term impact.

The Cholangiocarcinoma Foundation (CCF) received a gift of $500,000, the largest in its history, from The Scott Family, in memory of wife and mother, Andrea (Breuhan) Scott, who lost her courageous 18-month battle with the disease in 2014.

My name is Tom Leitzke. I was born and raised in Sandusky, Ohio, and was living as an expatriate in Japan, managing global operations for a publicly-traded robotics company when I was diagnosed with perihilar cholangiocarcinoma (stage 3B) in 2007. I was 58.

There is a lot of planning that goes on behind the scenes and we are working hard to make it the best conference yet. This week we are sharing 5 ways you can get involved with the 2021 Annual Conference now.

CCF is excited to announce the 2021 Annual Conference t-shirt logo contest. CCF is now accepting logo proposals for t-shirts, which will be introduced for the Annual Conference.

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…

My name is Alie Plouff, and I am a volunteer and former caregiver with the Cholangiocarcinoma Foundation. I first discovered the Cholangiocarcinoma Foundation when my parents returned home from the Annual Conference in Salt Lake City in 2016.

Researchers at Emory University are studying quality of life among patients with cholangiocarcinoma (CCA). Please consider taking this brief survey to help them better understand patient experiences for those living with CCA.

This holiday season, we are asking everyone to take part in our annual year-end holiday campaign called #CandlesForTheCure by lighting a virtual candle in honor or memory of friends or family who have been affected by cholangiocarcinoma.

Three impactful ways you can make a year-end gift As 2020 comes to a close, there are a number of opportunities to support the work of the Cholangiocarcinoma Foundation. One good thing to come out of the COVID Pandemic is the CARES Act (Coronavirus Aid, Relief, and Economic Security Act) provisions for charitable giving. The…

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.…

Home / Blog / We’re planning the 2021 Annual Conference and we need your feedback! We are hard at work planning our virtual Annual Conference, to be held March 31—April 2, 2021. One of the key components of the Conference is Patient Day, where we seek to provide our community with information, support and a…

My name is Libby Wolfe. I live in Pewaukee, Wisconsin. I grew up in Connecticut, went to college in Virginia, and moved to Chicago in the 1970s. In Chicago, I worked as a property manager for a Real Estate firm.

Each week we present the latest information and updates relevant to the CCF community. Support Groups will be held the 1st (Patient) and 3rd (Caregiver) week of every month and Educational Webinars will be held on the 2nd and 4th week of each month. Please join us the first Thursday of the month for a…

Holiday sales events are happening from November 27th – December 1st. Need a housewarming gift? A sweatshirt or hat to keep you warm this winter? A stocking stuffer? Look no further than the CCF Awareness Store.

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…

The reason the holidays are “the most wonderful time of the year” is that we’re reminded to be thankful, reflect on our blessings, and do acts of kindness that bless us in return. As the holiday season approaches celebrate the spirit of the season by giving back.

Help us meet our goal of 100 new sign-ups by 2021! Join the CCF registry through Ciitizen to advance research for cholangiocarcinoma, and Ciitizen will donate $25 to CCF. During the “Giving Thanks by Giving Back” Campaign, CCF and Ciitizen are partnering up with the goal of helping at least 100 patients collect, summarize and share…

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…

In our most recent November Volunteer Meeting, we discussed the newest projects that we are working on and how YOU can get involved. No matter your skills or availability, we have a place for you.

Need a housewarming gift? A sweatshirt or hat to keep you warm this winter? Look no further than the CCF Awareness Store. This week we’d like to highlight 5 of our newest items!

NuCana will introduce the science behind NUC-1031, the medicine being compared in combination with cisplatin in the NuTide:121 study against the current standard of care in Biliary Tract Cancer, gemcitabine and cisplatin.

As we approach the end of the year and giving season, here are 5 great ways to support CCF in our mission to find a cure and improve the quality of life for patients.

The Holiday Season is approaching us and will be here before we know it. This week we’d like to share 5 ways you can get involved with the CCF community and help make a difference.

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…

Roz has always been very healthy and active, especially among us sibs, and the news of her having cholangio took us by storm. Being the first born, her “to do” list began to grow: schedule doctor appointments, research on how to fight this unknown disease…

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.