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About the Author

I am a 31-year old mother of a two-year-old son from Roxbury Township, NJ.  My name is Sarah Bennett and I  was diagnosed with cholangiocarcinoma on July 9, 2014 after a visit to the emergency room with severe back and right abdominal pain. For the longest time I thought I was the only one with type of cancer. I think it’s important to be able to connect to others so I am sharing my story through the CCF blog.  I hope that you will also join the conversation.


CCF meets with CASCAP and The Cholangiocarcinoma Foundation of Thailand

From our friends at CASCAP … CASCAP and together with The Cholangiocarcinoma Foundation of Thailand hosted a meeting with Prof. John Bridgewater University of London, Stacie Lindsey , President, Cholangiocarcinoma Foundation USA, Prof. Milind Javle M.D., Tenure Track, Department of Gastrointestinal (GI) Medical Oncology, Division of Cancer Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX . Vice Chair of the Cholangiocarcinoma Foundation USA, Asst. Prof. Dr. Yun Shin Chun M.D., Department of Surgical Oncology, Division of Surgery, The University of Texas MD Anderson Cancer Center, Houston, TX. Dr. Mitesh J. Borad, M.D. Mayo Clinic, Department of Oncology, Phoenix, Arizona, Sean Tuberville Board member, Cholangiocarcinoma Foundation USA., and Patty Maxin, Patient Advocate, Cholangiocarcinoma Foundation USA.   This first meeting with our US... read more

Andrea’s Night 2017

Andrea’s Night “On the 50 Yard Line” was held on January 14, 2017 in Evansville, IN, by Dan Fuquay and Andrea Remembered in memory of Andrea Fuquay.  This annual event was once again a huge success with a sold-out crowd of 500 attendees!  The fundraiser cleared $110,000 for distribution to various charities including the Cholangiocarcinoma Foundation, which received $30,000. Thank... read more

Five Biopharma Companies Headline Industry Night at Cholangiocarcinoma Foundation Annual Conference

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 19, 2017 /EINPresswire.com/ — The Cholangiocarcinoma Foundation (CCF) announced today that five biopharmaceutical companies have been selected to present their clinical trial concepts at the upcoming Annual Conference in Salt Lake City, Utah. During the Industry Night event, representatives from ArQule, ASLAN Pharmaceuticals, Delcath Systems, Inc, InnoPharmax and Leap Therapeutics will present their clinical trial concepts to the International Cholangiocarcinoma Research Network (ICRN) which represents more than 30 investigators... read more

Saha Laboratory Opens Doors to Study Highly Lethal Cancer of the Bile Ducts

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 lethal malignancy of the liver bile ducts. Supryia Saha, MD PhD, has joined world-class scientists in Seattle at the Fred Hutch Cancer Research Center – the home of three Nobel laureates – to revolutionize prevention, detection and treatment for cholangiocarcinoma. Liver cancer is one of the fastest growing cancers in the United States and world-wide both in incidence and mortality. Intrahepatic cholangiocarcinoma (ICC) is the second most common sub-type... read more

Fall 2016 Newsletter

Fall 2016 Newsletter 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 small group of employees and a sizeable group of volunteers. We’ve moved from covering the cost of stamps, the website and travel from our own pockets, to awarding over $1.2 million in research grants. We’ve moved from being casually recognized by pharma and biotech, to being asked for our input on new clinical trial concepts. We’ve advanced from pleading for a voice for our patients at... read more

Cancer Moonshot

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 man, one giant leap for mankind.” In January 2016, our nation took one small step in the right direction towards a cure for cancer. When President Obama gave his final State of the Union, he announced that Vice President Joe Biden would be heading a vital initiative called the National Cancer MoonShot 2020. Having lost his son, Beau, to brain cancer last May, Biden took the reins on this... read more

Charlie Chanaratsopon, CEO and Founder of “Charming Charlie” Cares

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 /EINPresswire.com/ — Lisa Layton has a diagnosis of stage IV intrahepatic cholangiocarcinoma. She was first introduced to the brand “Charming Charlie” while a patient at Oregon Health Sciences University in Portland, Oregon. While undergoing treatment in the oncology unit, Lisa received a darling “Charming Charlie” hat with an adorable pom-pom. She proudly wore the donated hat and garnered many compliments. Lisa then visited her local “Charming Charlie” store in... read more

Campaign for the CURE: Meet Kris Jacobs

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 there was a mass in my liver. Lots of tests, two oncologists (my 1st new word) later, and a biopsy led to hearing my 2nd new word… CHOLANGIOCARCINOMA. I looked up that word and got really scared. In 2011 the chances were about 7% that I would live two years. It was one of the worst nights of my life. I was 47, had a pretty serious boyfriend, was the happiest... read more

Campaign for the CURE – Meet Sarah and her husband Andy

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 devoted husband Andy Macias, a naval officer stationed in Honolulu. Together, Andy and Sarah enjoyed an active military lifestyle living in Maryland, Japan, California, Brazil, and Miami. Sarah was driven to expand her personal boundaries. Sarah joined the U.S. State Department in 2008. She successfully completed a rigorous training program, and in 2009 earned her qualification as both a federal law enforcement officer and a Special Agent with the... read more

Campaign for the CURE – Patty Corcoran

Hello! My name is Patty Corcoran, and I am 51 years old. In late February 2011, I was diagnosed with intra-hepatic cholangiocarcinoma. Since then, I have received numerous chemotherapy medications, undergone three rounds of radiation, and even had a 15 month break from all treatment because I was doing so well. I have participated in two clinical trials, including the one I am on currently. In March 2015, I enrolled in a Phase II trial for the Novartis BGJ398 at MD Anderson. I experienced few ill effects, aside from diet restrictions and losing a few toenails, and the drug kept my cancer stable for about eight months. At that point, my doctor and I decided it would be a good time for me to... read more

Campaign for the CURE – Meet Danny van Brenk

Meet Danny van Brenk, age 34 who lives with his wife and two children Floris (5) and Isabelle (2) in Heukelum, a small town in the Netherlands. I was diagnosed February 2014 with intrahepatic cholangiocarcinoma. Doctors found tumors in 70% in my liver and I have lung metastases. I was told by the doctors in the Netherlands that there was no treatment left for me and I would only have a few more months to live. Clinical trials for cholangiocarcinoma weren’t available in the Netherlands at that time so we started searching for trials in Europe. We went to Belgium and Germany but there were no options for cholangiocarcinoma treatment, not even in a trial. Via my Dutch surgeon I heard about a treatment in New York at Memorial Sloan Kettering Cancer Center. It’s called the HAI-Pump. The pump directly delivers... read more

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