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.

Due to the Covid-19 pandemic, many of these events have had to transition to virtual events. We recognize this is no easy task and are grateful these events can still take place. With these circumstances in mind, CCF is grateful that these events offer the cholangio community a way to engage with others, be active, raise money for the Foundation and have fun!

Please visit the individual links below to support our fellow volunteers.💚

Read More

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.

Read More

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…

Read More

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.…

Read More

Please join us this Thursday, July 9 for two events with our partners at Ciitizen! As part of the CCF Webinar Series, we will start with an educational webinar with Ciitizen’s Chief Regulatory Officer, Deven McGraw, focused on patient health data rights and privacy, and we will follow the webinar with a virtual onboarding event for anyone who…

Read More

July is here, and the 2020 Cholangiocarcinoma Foundation’s Virtual Conference is just weeks away. CCF plans on having some fun during the conference! We’re excited to announce our first Lip Sync Battle. The winning song is “Fight Song” by Rachel Platten. Now it’s time for the fun to begin! Start planning your lip sync performances…

Read More

We’ve loved connecting with you each week and hope you’ll continue to do so. Our Weekly Webinars provide our CCF community with the latest information and updates pertaining to CCA. Our hope is to continue to connect, inspire and educate. Each week we present the latest information and updates relevant to the CCF community. Support Groups will…

Read More

The COVID 19 pandemic is the most wide-reaching and devastating public health event of our lifetimes. It has reached nearly every corner of the globe. Even those who have not contracted the disease have been affected by it. The Cholangiocarcinoma Foundation would like to know how the COVID-19 pandemic has affected your, or your loved…

Read More

Subscribe to our YouTube Channel The Cholangiocarcinoma Foundation is here for you! We’ve loved connecting with you each week and hope you’ll continue to do so. Our Weekly Webinars provide our CCF community with the latest information and updates pertaining to CCA. Our hope is to continue to connect, inspire and educate. Our Clinical Trials…

Read More

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.

Read More

Subscribe to our YouTube Channel Register Here What is #MapItForward & the Real World Genomics Study Recent medical advances support the need for all cholangiocarcinoma patients to receive biomarker testing as part of their treatment, however the rate at which patients are actually receiving this testing in the real world is unknown. Real-world evidence is…

Read More

Dear Friends, With the tragic deaths of George Floyd, Breonna Taylor, Ahmaud Arbery and many others over the years and the confluence of recent events, important conversations are happening throughout the nation, including at CCF. We know there is work to do, within every organization and throughout the nation, for us to come together in…

Read More

You spoke and we listened! In light of COVID-19 pandemic, the Cholangiocarcinoma Foundation created a weekly webinar series to help our community navigate through these difficult times. The response has been overwhelming and we will continue the weekly gatherings as long as there is interest! Based on an abundance of feedback, the weekly sessions will…

Read More

You spoke and we listened! The Cholangiocarcinoma Foundation CCF is excited to continue our series of webinars. Each week we will bring you the latest information and updates relevant to the CCF community. Our hope is to continue to connect, inspire, and educate. Bi-weekly educational webinars will feature the newest developments and presentations from experts…

Read More

“Volunteers do not necessarily have the time, they have the heart.”  Today CCF celebrates what volunteers do year-round. To our volunteers, you truly make an incredible difference in the work, and we thank you! Happy Volunteer Appreciation Week. Subscribe to our YouTube Channel Happy Volunteer Appreciation Week. You can join us in thanking our volunteers…

Read More

FDA Approves Incyte’s Pemazyre™ (pemigatinib) as First Targeted Treatment for Adults with Previously Treated, Unresectable Locally Advanced or Metastatic Cholangiocarcinoma WILMINGTON, Del.–(BUSINESS WIRE)–Apr. 17, 2020– Incyte (Nasdaq:INCY) today announced that the U.S. Food and Drug Administration (FDA) has approved Pemazyre™ (pemigatinib), a kinase inhibitor indicated for the treatment of adults with previously treated, unresectable locally advanced or metastatic cholangiocarcinoma…

Read More

Around 9 o’clock on a Saturday night in January 2017, I heard weird noises in the bathroom. I opened the door to find my son curled over the toilet. “It’s only cranberry juice. It’s only cranberry juice,” he muttered into the bowl. I took a glance- that wasn’t cranberry juice. I can hardly believe it…

Read More

Our friends at D2 Creative and Mill Pond Communications answered the #UNOpenBrief to help #STOPTHESPREAD of #COVID19. Their answer: an ILLUMINATION to help reduce face touching in the form of a playful 30-second PSA.

Read More

CDC recommends wearing cloth face coverings in public settings where other social distancing measures are difficult to maintain (e.g., grocery stores and pharmacies), especially in areas of significant community-based transmission.

Read More

Today CCF celebrates what volunteers do year-round. To our volunteers, you truly make an incredible difference in the work, and we thank you! Happy Volunteer Appreciation Month!

Read More

Home / News None of us wanted it, Cholangiocarcinoma has thrust us, kicking and screaming into the role of potential superheroes. Let me explain… These are tough times as the world locks down. I’m sure many of you have already seen posts or heard from friends how they are struggling with the anxiety of not…

Read More

Each week, we’re going to offer five ways you can fight COVID-19, overcome the fear of the unknown and deal with the uncertainty of this situation.

This week, DO THE FIVE to help stop the disease.

Read More

The information about the COVID-19 pandemic changes rapidly, and it’s hard to stay up to date with the latest information. On this Mayo Clinic Q&A podcast, Dr. Gregory Poland, answers COVID-19 questions.

Read More

In this uncertain time, we want you to know, wherever you are that we are with you. Distance and physical separation cannot break the bonds we have made in this community.

Read More

Home / COVID-19 / What COVID-19 does to the human body Munich design house Kurzgesagt explains in an easy-to-understand video what happens to the human body once it has been infected with COVID-19. They look at how infection occurs, what cells are involved in both enabling and killing off the virus and how the autonomic immune…

Read More

During this tumultuous time, Dr. Geret Giles offers some advice on how to deal with uncertainty.

Dr. Geret Giles is a licensed psychologist with a private practice in Pleasant Grove, Utah…

Read More

TeamCCF began in 2016 as a way to raise money through athletic events for the Cholangiocarcinoma Foundation. Since its inception, TeamCCF has participated in the Bank of America Chicago Marathon; the TCS New York City Marathon; The Berkeley Half Marathon;  the AACR Philadelphia Marathon, Half Marathon and 8k; The CNO Financial Group Indianapolis Monumental Marathon,…

Read More

TeamCCF began in 2016 as a way to raise money through athletic events for the Cholangiocarcinoma Foundation. Since its inception, TeamCCF has participated in the Bank of America Chicago Marathon; the TCS New York City Marathon; The Berkeley Half Marathon;  the AACR Philadelphia Marathon, Half Marathon and 8k; The CNO Financial Group Indianapolis Monumental Marathon,…

Read More

We wanted to share an exciting new program that our friends at Stand Up To Cancer (SU2C) recently launched. The SU2C Canada Kate McGarrigle Fund Music As Healing Grant Program is an initiative that encourages songwriter cancer patients and survivors to share their cancer journey through original music compositions. Applications for the program are open…

Read More

My story begins back in 2005. I was pregnant with my oldest son Dylan and had a very normal pregnancy. He was born on March 12th-nine days late. I ended up having a C-section. I think if Dylan had his way, he would have stayed inside – lol. A few weeks after his birth I…

Read More

February 12th, 2020 – Six charities from around the world have joined together to celebrate World Cholangiocarcinoma Day. Cholangiocarcinoma, a highly lethal cancer with poor prognosis, arises from the bile ducts in the liver. It is often diagnosed at advanced stages when treatment is only minimally effective, emphasizing the imminent need for novel therapies. There…

Read More

The Cholangiocarcinoma Foundation is pleased to announce its 7th Annual International Conference scheduled for April 1-3, 2020 in Salt Lake City. Because patients living with cholangiocarcinoma have a direct stake in their own medical care and are in a unique position to provide input, CCF has expanded its Annual Conference to include programming that addresses…

Read More

An unspeakable loss has affected the cholangiocarcinoma world on Friday, January 10, 2020. Melinda Bachini, our beloved patient advocate, tragically lost her son, Skylar Evan Kiefer, during the second decade of his life. In typical Melinda fashion, even in the darkest hours, her focus was to ensure that Skylar’s organs would benefit others. Friends in…

Read More

Is the secret to combating a “silent killer” hiding in our health data? That’s what we have been teaming with Komodo Health to find out. Intrahepatic Cholangiocarcinoma, or ICCA, is the second most common primary liver cancer in the world. Because its early symptoms often go unnoticed or can be attributed to other ailments, diagnosis…

Read More

Join us for an afternoon dedicated to the science of cholangiocarcinoma. The symposium will include presentations from area clinicians highlighting their work in cholangiocarcinoma. You will also hear the patient perspective of cholangiocarcinoma. There will be a break with complimentary snacks and beverages. The day will end with a panel discussion and Q&A around the…

Read More

By joining our CCF Patient Registry, your un-identified health information will provide important data to researchers to better understand cholangiocarcinoma and help develop new treatment options. To assist you with gathering your health information, CCF has partnered with Ciitizen to help our patients, at no cost to you, collect your health data, and should you choose, share it back with…

Read More

Now it begins. Thanksgiving. Giving Thanks. Food, Family, Friends, Fun. Turkey, Traditions, Touchdowns, Travel. Tension?! I remember a little of what I think I learned about the “First Thanksgiving” as a child. The Pilgrims came from England on a ship. “If April showers bring May flowers, what do May flowers bring? PILGRIMS – Bazooka Joe”. …

Read More

“Giving is not just about making a donation. It is about making a difference.” Last year on Giving Tuesday, people came together on Facebook to raise over $125 million to support the causes they care about. Building on this incredible momentum, and to further amplify that generosity, this year on December 3rd, starting at 8:00…

Read More

About a month ago my dad got a Facebook message from Carlos, a good friend living in Guatemala. He mentioned that he was coming to the United States with his family soon and was asking about places he should visit in Utah. My dad recommended Zion National Park, Arches National Park and a few other…

Read More

The Mike Shane Memorial Fund helps reduce financial barriers for patients who need a second opinion on their initial diagnosis of cholangiocarcinoma*. Purview, a global healthcare technology company, created this fund in memory of Mike Shane, a longtime friend and supporter who passed away on April 28, 2019, after a year-long battle with cholangiocarcinoma. Mike…

Read More

On September 21, 2019 Heidi Rhea’s dream of having a successful and lively family friendly Oktoberfest celebration, in support of the Cholangiocarcinoma Foundation (CCF), came true. The 1,200 plus attendees surprised even Heidi herself. Heidi, a patient of cholangiocarcinoma, is also an active volunteer with CCF. She plays a crucial part in helping bring awareness…

Read More

CCF sponsored a half-day symposium at the University of Chicago last week.  Here are some notes and impressions.  It’s not complete, and perhaps I got some of it wrong.  I’d appreciate comments and corrections. Stacie Lindsey outlined the history and mission of CCF.  I can’t help but feel that her work and that of her…

Read More

TeamCCF had 18 runners participate in the 2019 Bank of America Chicago Marathon, Sunday, October 13th.  This year’s team was the largest to date with men and women of all ages from 13 different states. Together the team raised an unprecedented $49,485. And they will continue to fundraise through the month of October. Runners participate,…

Read More

Written by Stephanie Zinis In May of 2018 our families’ lives were forever changed. A routine doctor visit led to an accidental discovery that my mom, Renee, had cholangiocarcinoma, a rare cancer affecting fewer than 40,000 per year. After my mom’s diagnosis we began researching and preparing for the future ahead. We came across many…

Read More

October 1 is Rare Cancer Day as proclaimed by the National Organization for Rare Disorders (NORD). The NORD website ​shares the goal is “To shine a light on the rare cancer community, a group of individuals who are often overlooked in the broader cancer community.” The President and Founder of the Cholangiocarcinoma Foundation (CCF) Stacie…

Read More

Charles Graeber, The Breakthrough: Immunotherapy and the Race to Cure Cancer, Twelve, 2018. “Cancer kills millions of people every year and is one of humanity’s greatest health challenges. By stimulating the inherent ability of our immune system to attack tumor cells James Allison and Tasuku Honjo have established an entirely new principle for cancer therapy.…

Read More

“Cholangiocarcinoma sucks, it’s a tough, tough cancer.  Being difficult to diagnose, often diagnosed in later stages, and having limited treatment options, we knew we wanted to see how we could maybe help change that for future CCA patients” explained Jan Meyer, a current cholangiocarcinoma (CCA) patient. Recently, the Cholangiocarcinoma Foundation had the opportunity to interview Jan…

Read More

Join us for an afternoon dedicated to the science of cholangiocarcinoma. The symposium will include presentations from the University of Chicago’s hepatobiliary team highlighting their work in cholangiocarcinoma. You will also hear the patient perspective of cholangiocarcinoma. There will be a break with complimentary snacks and beverages. The day will end with a panel discussion…

Read More

ArQule, ASLAN Pharmaceuticals, Delcath Systems, Inc, InnoPharmax and Leap Therapeutics to Present Clinical Trial Concepts to International Research Network Truly, the best GI cancer meeting where the best science, most collaboration and meeting of the minds occurs year after year.” — Renuka Iyer, MD Roswell Park Cancer Institute SALT LAKE CITY, UTAH, UNITED STATES, January…

Read More

FROM OUR PRESIDENT This issue of the newsletter marks an exciting milestone for the Cholangiocarcinoma Foundation (CCF), as we are celebrating our tenth anniversary. As I think over the last 10 years, I can hardly believe where we started and where we are now. We’ve grown from a small group of concerned volunteers to a…

Read More

National Cancer MoonShot 2020 New Hope for Rare Cancers Before July of 1969, our nation thought that landing on the moon would be an impossible feat, only imaginable in our wildest dreams. When Neil Armstrong and Buzz Aldrin walked on the moon, the word “impossible” was shattered when Armstrong said, “That’s one small step for…

Read More

The abbreviation for cholangiocarcinoma, a rare form of liver cancer is “CC” however, one “CC” patient in Oregon prefers to think of it as “Charming Charlie.” Charming Charlie stores are filled with colorful clothing, beautiful jewelry, amazing accessories, delightful employees and enthusiastic shoppers. — Lisa Layton SALT LAKE CITY, UTAH, UNITED STATES, September 13, 2016…

Read More

My name is Kris and my journey began in Feb. 2011 when my back started hurting. The band of pain from my back to my chest was excruciating. I was vomiting from the pain. It eventually lessened a bit. I didn’t want to go to the hospital. On Monday, I went to see my Dr. and was sent for an ultrasound. It was just gallstones. Wrong! After a CT scan we knew…

Read More

Sarah Pieh was born in Adrian, Michigan on New Year’s Eve 1976. From a young age Sarah had a distinctive love of reading, traveling, and exploring new things. After graduating Cum Laude from Northwestern University in 1999, Sarah worked in Chicago for McMaster-Carr Industrial Supply before moving to Hawaii in 2001. There she met her…

Read More

“Collective Wisdom” is the theme for this year’s ASCO’s Annual Meeting in Chicago. Our attending team includes Melinda, Barbara, Jason, Andie, Kathi, Donna, Stacie and Marion.  Melinda and Barbara staffed the exhibit while the rest of our team were dispersed throughout the conference halls attending sessions or connecting with the various biopharma industry, researchers, physicians and advocates. In…

Read More

Influencing health care in the legislative arena assuring for an effective health care system is of great interest to the Cholangiocarcinoma Foundation and the patient community at large. We recognize that many issues are too big or complex to be easily resolved by a single organization and that it requires the knowledge of organized groups.…

Read More

A great email we just received from Karen… Our family held a Family Reunion two weeks ago in Richmond, Virginia. During the reunion, we had a Silent Auction to raise money to donate to the Cholangiocarcinoma Foundation in honor our Mother who passed away from cholangiocarcinoma on 12/10/2011. We raised $1,079.00 amazingly enough! Thank you…

Read More