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…

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Alexander Marzano “Al”, 85, Army Veteran was a native Chicagoan from the north side of the city.  He was diagnosed with cholangiocarcinoma in February 2019 and fought hard every day.  He ended his brave battle on May 3, 2020. Al graduated high school from Waller High and joined the Army.  When returning from the service…

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

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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…

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You spoke and we listened! The Cholangiocarcinoma Foundation CCF is excited to announce our newest 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…

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I know we were all looking forward to the fundraiser at Yankee Stadium this year. Unfortunately due to COVID, we can not guarantee that MLB games will be played, or that it will be safe to host the event in 2020. Some have asked if there would be a way to donate without attending the…

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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…

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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.

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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.

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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.

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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.

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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…

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Michael Goepfert, 61, succumbed to a nine-month battle with Cholangiocarcinoma, passing away on Sunday February 23, 2020 at his home in Vernon, CT. He is survived by his significant other Mary, his mother, brother, two sisters, five sons, four grandchildren, and many friends.  He was an exceptional father to his five sons who were the…

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Age 75, of Penn Hills, born in Spignio Saturina, Italy, passed away on Tuesday, February 18, 2020, at her home. Beloved wife for 55 years of Tony Listorti; beloved daughter of Pasquale Tamburrino and Inessa Stagno-Tamburrino; Loving mother of Mark (Lisa) Listorti, Mischele (Gus) Damian, Marie (Dr. Darren) Brash, and Natalie (Vito) Ferrante. Cherished Nonna…

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Kathleen Cornyn, age 70, of Scituate passed away February 16, 2020 after a brief illness. Daughter to the late William and Kathleen Cornyn. Cherished sister of Barbara Serino, her late husband Thomas of Marshfield, MA and Elizabeth Harbilas, her husband Michael of Belmont, N.H. She will be lovingly remembered by her many nieces and nephews.…

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Rich was a loving and kind person, the best husband, father, son, brother, grandfather and friend anyone could have.  He was passionate about the people he loved. He loved fishing, boating, gardening, traveling and just being with people.  He will be sorely missed by everyone. In lieu of flowers, please donate to the Cholangiocarcinoma Foundation.…

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Kami Demelo passed away peacefully Sunday, February 9 surrounded by family. She fought Cholangiocarcinoma for bravely for four years. Kami had a beautiful brave soul. Kami was a nurse at Garden Park Medical Center. She loved her family, her career, and taking selfies. She lit up any room she walked in and had an infectious…

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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…

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Invitation to participate in the Navigating Clinical Trials Poster Session at the 2020 Cholangiocarcinoma Foundation Annual Conference. We cordially invite you to participate in a poster session on Wednesday, April 1st at 2:15pm geared towards educating patients and caregivers on your clinical trial in cholangiocarcinoma. This session will be specifically for patients and caregivers to…

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You are cordially invited to attend a Speaker Reception. Wednesday, April 1, 2020 7:00-8:00 pm (Mountain)Name* First Last Institution*Email* RSVP*Yes, I will attend the Speaker ReceptionNo, I will not attend the Speaker ReceptionComments

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World CCA Day (12th February) – Social Media Schedule #WorldCCADay use emojis when appropriate, right-click each picture below and “save as” for a full-size, high resolution version. Tweet Graphic Tweet copy Handles to tag Date & time 1 It’s time again for us to unite around the world to raise awareness of #Cholangiocarcinoma. Learn how…

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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…

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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…

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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.…

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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…

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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…

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“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…

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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…

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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…

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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…

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On August 12, the Cholangiocarcinoma Foundation announced a partnership with Ciitizen. This partnership is formed around the belief that you should have full access to your health data. Cholangiocarcinoma patients have immediate access to the Ciitizen platform, which enables you to gather your medical records and leverage this platform to control your health data. When…

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Over 150 runners braved the Texas heat in Taylor, TX, on Saturday, Aug. 10th, to support the second annual “Michelle’s Hot Peeps Beat CC” 5K and Fun Run race to support finding a cure for cholangiocarcinoma. The event was planned in memory of Michelle McDonald who last her battle with the disease, at the age…

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Since 2015, the Foundation has awarded more than $1.9 million in funding for innovative, high-quality research. SALT LAKE CITY, UTAH, USA, August 6, 2019 — The Cholangiocarcinoma Foundation (CCF), a nonprofit organization funding novel research for bile duct cancer, has awarded the 5th cycle of its Research Fellowship Program. CCF is pleased to support 7 projects for…

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All of the presentations at our 2019 Annual Conference are online and waiting to be viewed! Visit our Conference in Review page for photos, a recap video and videos from many of the presentations, or if you prefer, visit our YouTube Channel, where we have all of the Conference Videos arranged into a playlist.

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Marion and I worked together daily for over 10 years building the foundation and we’ve talked often since her retirement. She worked with many of you over the years to make sure the patient voice was considered in all endeavors and she admired the way you treated “her” patients. She took great pride in her…

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Avery has a huge love for ice cream and all things chocolate. She also wants to help find a cure for cancer, specifically cholangiocarcinoma, in memory of her grandmother. So this sweet 9 year old decided to use her love of ice cream to raise money and awareness for the The Cholangiocarcinoma Foundation. Avery‘s Ice Cream for a Cure fundraiser in February generated over $1,377!

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All of the presentations at our 2018 Annual Conference are online and waiting to be viewed! Visit our Conference in Review page for photos, a recap video and videos from many of the presentations. 2018 Annual Conference in Review

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I successfully completed the Publix Georgia Half Marathon this morning. With the support of some great friends and family, we were able to raise $5,200 (counting $200 I understand was sent directly to the CCF) for the Cholangiocarcinoma Foundation. I am humbled and honored by all the support I’ve received, and I hope these funds…

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Dear CCF, I set my goal very high this year and unfortunately I did not make it. I am not disappointed though, we did really well. We raised a little over $35,000 (this number includes in- Kind donations as well). This is an increase of $7,000 from last year! I have received a lot of…

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Sara is a Senior Intellectual Property Counsel for an oilfield services company in Houston, Texas.  Sara joined the Cholangiocarcinoma Foundation in 2006, shortly after her close friend, Kelly Lester, was diagnosed with intrahepatic cholangiocarcinoma.  Initially Sara served as the Foundation’s first patient advocate, and later served roles as Secretary, President, and Trustee.  After a 5-year hiatus, Sara rejoined the Foundation in 2017…

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Board Member, Houston, Texas Dan is an Investment Manager based in Houston that focuses on developing and managing quantitative, systematic strategies on behalf of clients.  He is a Managing Member and Founder of Glenhaven Capital LLC, a Commodity Trading Advisor, as well as the Managing Member and Founder of Evan Capital LLC, which is a Registered…

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Event in memory of Kathy Plouff I am so happy to update you to tell you the Fundraiser we had in memory of my Mom on what would have been her 52nd birthday was a HUGE success,I believe that we raised a little over $2,000!   We are so grateful for our generous friends and…

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Hi! Just getting back to you about our first fundraising event that was held on July 22- Knock Out Cancer. We had a great turnout with 100+ people, raising over $5,000! We created t-shirts and cups for this event that were able to be purchased, along with about 35 donated baskets that we raffled off.…

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July 2017 was the second annual fundraiser for the Cholangiocarcinoma Foundation in honor of Kelly Gratz.  Kelly was diagnosed in February 2016 with stage 4 Cholangiocarcinoma. His children decided to host a fundraiser to rally as much emotional support for him through this battle and also to be able to raise money for the foundation and research. It was…

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Palliative Care Podcast Palliative care should be implemented at the beginning of any serious or life-limiting diagnosis. It restores control of decisions to the individual. Palliative care practitioners work with individuals to control symptoms related to the illness, or the treatment. This includes pain, nausea/vomiting, appetite and taste changes, nutrition, etc. With any diagnosis that…

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Board Member, New York City, New York Ross is an Investment Professional with a New York based alternative asset manager where he focuses on making investments in private energy companies. Previously Ross worked as an investment analyst in the energy private equity group of Och-Ziff Capital Management and is active in working with a number of…

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Board Member, Houston, Texas Patty received an M. Ed in Administration and Supervision from the University of Houston.  She has dedicated her professional career focused on the education of students with medical needs.  In addition to her teaching responsibilities, she has a long involvement with various Houston charities and NGOs.  In 2014, Ms. Maxin retired…

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Ms. Dupont holds a M. Ed degree in History. She has been a middle school history teacher for 17 years at West Running Brook Middle School, and has been recognized as Teacher of the Year several times. She has been a patient advocate with the Cholangiocarcinoma Foundation since 2007. Her experience as an educator, combined with her personal…

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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…

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Most presentations at our 2017 Annual Conference are online and waiting to be viewed! Visit our Conference in Review page for photos, a recap video and videos from many of the presentations. 2017 Annual Conference in Review

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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…

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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…

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Vice President, Warwick, Rhode Island Bruce Coppock served twice as president & managing director of the Saint Paul Chamber Orchestra, a position in which he served both as the artistic and the executive leader of the organization.  Coppock first led the SPCO from 1999 until 2008, when he stepped down due to metastatic cancer of…

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Robert Catherwood January 12, 1947 – October 17, 2016 Loving husband, father, and papa Robert “Bob” Catherwood, 69, of Somerset, N.J., passed away on Monday, Oct. 17, 2016. Visitation is Wednesday and Thursday from 2 to 5 and 7 to 9 p.m. at Plinton Curry Funeral Home, Somerset, with services Friday at 10:30 a.m. at…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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Shaving for Cancer As most of you know the worlds greatest shave is coming up. But blood cancer is not why I’m shaving mine. In 2007, my father passed away from a cancer most of you probably aren’t familiar with. It’s called Cholangiocarcinoma, which is cancer of the bile duct. Cholangiocarcinoma is known as a…

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“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…

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Presenter:   Flavio Rocha, MD Title of Presentation:   Targeting BAP1 Mutations in Intrahepatic Cholangiocarcinoma Summary of Presentation:   There are no good biomarkers for the early diagnosis of cholangiocarcinoma. CEACAM6 is an extracellular protein involved in cell signaling.  When overexpressed in gastrointestinal malignancies such as pancreas and colon cancer, it is associated with worse prognosis.  Therefore we hypothesized…

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Presenter:   Milind Javle, MD Title of Presentation:   Targeting BAP1 Mutations in Intrahepatic Cholangiocarcinoma Summary of Presentation: The purpose of this study is to identify molecular subgroups of cholangiocarcinoma by estimating the frequency of BAP1 mutations in patients with intrahepatic cholangiocarcinoma, examining BAP1 and other genes in cholangiocarcinoma to link with diagnosis and patient outcomes, and…

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Most presentations at our 2016 Annual Conference are online and waiting to be viewed! Visit our Conference in Review page for photos, a recap video and videos from many of the presentations. 2016 Annual Conference in Review

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Determining the Cellular Origins of Cholangiocarcinoma Allyson Merrell, University of Pennsylvania (Powerpoint Slides) A Balancing Act: Dysregulated Differentiation and Proliferation as a Novel Mechanism of Cholangiocarcinoma Formation Chad Walesky, Brigham and Women’s Hospital (Powerpoint Slides)  

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Zulu Race for a Cure Jeff (aka “Zulu”…college nickname, long story!) was diagnosed with cholangiocarcinoma (bile duct cancer) in June 2008 and defied the odds by surviving for nearly 27 months. We knew from the very beginning that his cancer was terminal. With the most inspiring attitude and humor, he fought every single day to be here…

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Part 1 Implementation of Precision Medicine Approaches in Intrahepatic Cholangiocarcinoma Daniela Sia, Icahn School of Medicine at Mount Sinai (Powerpoint Slides) Part 2 Fibroblast Growth Factor Receptor FGFR Family Gene Aberrations in Cholangiocarcinoma Katsuyuki Miyabe, Mayo Clinic (Powerpoint Slides)

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The Carnival for the Cure was a BIG SUCCESS! The Carnival was hosted at Lenux Stables in Huntersville, NC. This was our first year and we feel a great success. Even with a gloomy weather forecast, it was a perfect afternoon with zero rain. There was great food, music, and…as you can see from the…

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Will Jurman’s Fundraising Page Hello. My name is Will Jurman and I am 12 years old.  I am in the 7th grade at John Muir Middle School in Burbank, California.  Earlier this year, my friend, Christopher Wilke died of Bile Duct Cancer (That is a picture of Christopher to the right).  He was one of only…

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On Tuesday, Aug. 11 at Noon CT, Mayo Clinic hosted an interactive webinar on hilar cholangiocarcinoma (cancer of the bile ducts). Julie Heimbach, MD, Liver Transplant Program Surgical Director, and Sumera Rizvi, MBBS, Gastroenterology and Hematology Fellow, discussed hilar cholangiocarcinoma symptoms, diagnosis, and treatment options, including liver transplantation. A live question and answer session followed…

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Description: Filmed on location in New York during the Great Debates and Updates in GI Malignancies 2015, this webcast is part of a series that provides educational discussions on controversial areas in the management of gastrointestinal malignancies. Join us as nationally-recognized thought leaders take opposing sides on topics of clinical interest, and present updates in…

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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.…

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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…

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This presentation focused on the non-operative treatment of intrahepatic cholangiocarcinoma. Over the past 5 years, new technology has allowed much higher doses of radiation to be given safely. These doses are capable of ablating the tumor and preventing it from causing liver failure and death, leading to much longer survival and a realistic chance for…

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“Photodynamic Therapy, A Ray of Light in Cholangiocarcinoma: The OPUS Trial” presented by Dr. David E. Loren, Associate Director of Endoscopy and Co-Director of the Pancreaticobiliary Section at Thomas Jefferson University Hospital. Cholangiocarcinoma is a disease that often leaves patients and their physicians feeling that they have few options for treatment. This presentation discusses an emerging…

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Long-distance runner Bill Merriam’s diagnosis of cholangiocarcinoma never slowed him down. Bill is featured in the premiere issue of Beating Cancer, a new online magazine for those who want to “kick cancer in the teeth.” Read this article and view his video message to you.   Click here to view our webchat.

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Virginia Gill’s Page Jason & I are running the New Orleans Rock and Roll Half Marathon on January 25th 2015 in memory of Jaime Griff.  As many of you know we lost Jaime to cholangiocarcinoma in September 2014.  Research for treatment of this devestating disease is greatly underfunded.  We are running to help promote awareness and…

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Fundraiser Spotlight: Andrea Remembered On January 10th, AndreaRemembered.org held the fourth annual “Andrea’s Night at the Discovery Lodge”. More than 500 people were in attendance to celebrate her life and raise funds for the Cholangiocarcinoma Foundation and the Andrea M. Fuquay Memorial Scholarship at the University of Southern Indiana. This year, the “Andrea’s Night at…

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Title: Surgical Management of Cholangiocarcinoma – State of the Art and Beyond When:Thursday, Nov 13, 2014,  3:00 PM – 4:00 PM EST Presented by: Dr. Tomoaki Kato, Chief of the Division of Abdominal Organ Transplantation at New York-Presbyterian Hospital/Columbia University Medical Center Description: This webinar will feature Dr. Tomoaki Kato, a renowned expert in liver and intestinal…

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Click here to download the presentation (.pdf)   Topic:  Using Patients’ Own Immune System to Knock-out Cancer: Adoptive Cell Therapy Presenters: Steven A. Rosenberg, M.D., Ph.D., National Cancer Institute Eric Tran, Ph.D., National Institutes of Health Surgery Branch, Tumor Immunology Section Melinda Bachini, CCF Patient Advocate and NIH Research Study Participant Overview: Join Dr. Steven A. Rosenberg (National Cancer Institute)…

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On September 29, CCF held its first web chat with guest speaker Bill Merriam. Bill recently created a new video for the Foundation to share his perspective on cancer. Participants were able to submit questions in advance and join the web chat to hear directly from Bill. Bill is the father of 6 and grandfather…

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Some people with cholangiocarcinoma are unable to be cured because their tumor is either inoperable or has spread. These patients can develop blockages of the bile ducts or intestines causing jaundice, severe itching, nausea and/or vomiting. Palliative surgery or endoscopic procedures may be able to provide relief of symptoms. We will be discussing the role…

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Board Member, Los Altos, CA Jason is the Managing Director of the Retiree Research Center at Financial Engines. Financial Engines is America’s largest independent Registered Investment Advisor working with more than 750,000 individual clients and managing over $90 billion in assets. The Retiree Research Center is dedicated to helping retirees plan and adjust to an…

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An Important FREE Webinar: “Update on Cholangiocarcinoma: What we have learned from the International Hepatobilliary Neoplasia Biorepository” When: Monday, July 14, 2014 4:00-5:00 PM (EST) Presenter: Dr. Roongruedee Chaiteerakij, Mayo Clinic, MN Purpose: Educate patients, supporters and caregivers to understand how Mayo Clinic is using the information and bio-specimens provided to improve care all for…

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Topic:    “Update on Cholangiocarcinoma: What we have learned from the International Hepatobiliary Neoplasia Biorepository” Presenter: Dr. Roongruedee Chaiteerakij, Mayo Clinic, MN Purpose: Educate patients so they better understand how Mayo Clinic is using the information and bio-specimens they provide to improve care all for cholangiocarcinoma patients.   Download the Powerpoint Presentation  

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For those of you in the Sonoma, CA area, please consider attending “The 2014 Sonoma Bili Project Experience” on August 2nd hosted by The Bili Project Foundation.  The event hosted by Cedric the Entertainer includes dinner, live and silent auctions, and celebrity golf foursomes.  Proceeds benefit the UCSF Hepatobiliary Tissue Bank.  For more information, contact…

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Cholangiocarcinoma patient, Valarie Spiser–Albert beat the odds with her positive attitude Three years ago, Valarie Spiser-Albert was diagnosed with cholangiocarcinoma.  She was told she had 6-8 months to live but her with her positive attitude, she beat the odds! Check out her story and video. Thanks for KSAT TV for sharing this inspirational story. http://www.ksat.com/news/cancer-patient-says-she-beat-odds-with-positive-attitude/25478826

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Who was Jo Bryant? Jo Bryant was a healthy, working teacher and a very involved mother and grandmother when she went to the doctor for back pain.  (She taught for 43 years, up until the day she was hospitalized.)  After tests and a biopsy, a week later, she was diagnosed with cholangiocarcinoma.  Her health quickly…

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                   Forty years after becoming a father for the first time, six children and thirteen grandchildren later, the question has to be; how has my life been changed through all these years in the role of dad and grandpa?  The simple answer…I can’t possibly fathom how different…

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Another successful fundraising event by AndreaRemembered.org has raised $140,000 in memory Andrea Fuguay for both Cancer Research and Scholarship funding.  Andrea, much too young herself, left behind four young children.  However, her memory lives on through AndreaRemembered.org. The organization will donate $50,000 to the Cholangiocarcinoma Foundation and $90,000 to the Andrea M. Fuquay Memorial Scholarship Fund.…

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Board Member, Lambertville, New Jersey Lillie Chen is a principal partner at P2P MedCom, a medical education firm located in Lambertville, NJ. Prior to a career in medical education, Lillie worked as an ophthalmic photographer/technician and then later as director of marketing for a national ophthalmic ambulatory surgery management firm, Vision 21. In that position, she…

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A Day at the Races A Day At The Races My Dad, Joe Judge, was diagnosed with Cholangiocarcinoma in September of 2012. After consultations with leading hospitals and oncologists, it soon became apparent that there was no cure for this cancer, and managing the disease would only buy a few more precious months at best.…

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Vice President, Trumbull, Connecticut Dawn has over 10 years experience in marketing with top agencies. As Senior Account Director for Crossbow Group, she directs marketing strategy, tactics and execution to build customer relationships and deliver measurable results. She holds a B.S. in Advertising from the SI Newhouse School of Communications at Syracuse University and an M.B.A.…

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President, Herriman, Utah Stacie’s brother, Mark Clements, was diagnosed in 2005 and ultimately passed away from Cholangiocarcinoma on January 19, 2007. Stacie advocated for her brother, extensively researched treatment options and began networking with other patients, researchers and healthcare professionals. From this experience, the Cholangiocarcinoma Foundation was born. Stacie is a founding member and has served…

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Modeling Cholangiocarcinoma Webinar from Cholangiocarcinoma Foundation on Vimeo. “Like all cancers, cholangiocarcinoma is a genetic disease.  I will present our effort to comprehensively characterize the genetic landscape of cholangiocarcinoma and to use this information to develop genetically representative models of this disease that will serve as instrumental tools in our search for novel therapies. ”  –…

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New Intrahepatic Cholangiocarcinoma Clinical Trial from Cholangiocarcinoma Foundation on Vimeo. Intrahepatic cholangiocarcinoma affect approximately 2000 people a year in the US. Many patients are not able to have an operation to remove the bile duct cancer. We are preparing to enroll patients in a clinical trial which includes patients who can have an operation and…

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Feeling Guilty for Having Cancer from Cholangiocarcinoma Foundation on Vimeo. No one asks for cancer, but when the diagnosis is confirmed some patients feel guilty for being sick! In this informative webinar, Dr. Geret Giles discusses the phenomena of Patient Guilt and what we can do about it–for ourselves and for the ones we love.

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Grant Recipient Reports on Research Progress from Cholangiocarcinoma Foundation on Vimeo. Surbpong Tanasanvimon received a LIFe recipient grant from The Cholangiocarcinoma Foundation in 2012 this grant was awarded through the Conquer Cancer Foundation (which is the non-profit arm of ASCO). He recently had the opportunity to present his research at the 2013 GI Symposium.

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Tiffany asks: Dr. Giles: I’m fighting CC. I have a friend named Liza that is also fighting cancer (liver). She and I were friends before cancer. She is only 24, and I’m 30. Liza isn’t doing good. In fact she is about to die. How to I protect myself while show support to her family?…

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