News

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…

CCF is excited to announce our 2020 Annual Conference t-shirt logo contest. The logo will be printed on a white short-sleeved t-shirt. Contest Rules Submit logo designs to submit@cholangiocarcinoma.org. Acceptable formats include high-resolution .jpg, .ai, .eps and .pdf. Limit design to a maximum of 2 colors. Limit design to no larger than 10 inches square.…

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…

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…

During this time of year when we are counting our blessings and giving thanks, please consider joining the CCF Patient Registry and sharing your health history to help advance research for cholangiocarcinoma. By joining our registry, your un-identified health information will provide important data to researchers to better understand cholangiocarcinoma and help develop new treatment options. Adding your information…

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”. …

“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…

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…

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…

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…

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…

In a segment from this NBC’s Today Show, Karen Peterson discusses her experience with breast cancer. She has been an advocate for herself and others since her diagnosis. She talks about her genomic testing, being informed about her treatment options, as well as the importance of advocating for herself.  

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…

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.…

“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…

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…

FDA grants approval to Merk & Co. for Keytruda (pembrolizumab) “The hope is that advanced genetic information will one day be able to identify which patients are most likely to benefit from a specific treatment.” — Marion Schwartz SALT LAKE CITY, UTAH, USA, June 14, 2017 /EINPresswire.com/ — The U.S. Food and Drug Administration has…

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…

Saha Laboratory Opens Doors to Study Highly Lethal Cancer of the Bile Ducts Cholangiocarcinoma Foundation Sees Great Promise in New Research Lab [SALT LAKE CITY, Utah (November 9, 2016) With the opening of the Saha Laboratory for Liver Cancer Translational Research, a giant step forward has been made in the study of cholangiocarcinoma, a highly…

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…

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…

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…

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…

“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…