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The Cholangiocarcinoma Foundation’s Blog has been home to a variety of content ranging from patient perspectives to updates on medical advancements.  Contributors like patients Sarah Bennett and Cait Telaak share news and personal anecdotes, and the blog also serves as a resource for new patients to familiarize themselves with the Foundation.  Keep an eye out for new posts as together we explore the world of Cholangiocarcinoma and the tireless work towards a cure!


Chicago Cruise for a Cure

Come join us for a sunset cruise benefiting the Cholangiocarcinoma Foundation! October 14th 5-8pm (boarding at 4:30pm) Burnham Park Harbor Cost $300 per person Dinner included *** All funds raised will go directly to patient scholarships for the Annual Conference. If you have any questions, please contact jordan.giles@cholangiocarcinoma.org Register Today! While you’re in Chicago, check out our University of Chicago Cholangiocarcinoma Regional... read more

University of Chicago Regional Symposium

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 and Q&A around the presentations. Speakers Include: Milind Javle, MD, MD Anderson Cancer Center, Keynote Talia Baker, MD, University of Chicago Chih-Yi “Andy” Liao, MD, University of Chicago George Behrens, MD, VIR Chicago Stacie Lindsey, Cholangiocarcinoma Foundation Greg Metzler, Cholangiocarcinoma Patient When: Tuesday, October 15th, 1:00-6:00pm Where: Center for Care and Discovery (CCD) 5700 S. Maryland Ave Room: CCD 7th floor, Rooms 07850/07870 Chicago, IL 60637 Complimentary Parking Parking... read more

Webinar: CCF & Ciitizen-Take Control of Your Health Data

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 you control your data, you can more easily coordinate your care, get second opinions and contribute to the CCF registry. We’d like to introduce you to our friends at Ciitizen and the Ciitizen platform. For more information, please visit:... read more

Repurposing Drugs for Cholangiocarcinoma

Repurposing Drugs for Cholangiocarcinoma by Helen Scott Over three years ago I was diagnosed with an incurable cancer, at the age of just 39 when my 3 children were under the age of 5. Since then I have undertaken countless treatments including 30 chemotherapy cycles spanning 4 types, radiation, cyberknife, SRS, ablation, dendritic cell therapy, targeted drugs and immunotherapy, always with the knowledge that these were unlikely to cure me, but merely delay the inevitable. And like many other patients I complemented these treatments with a smorgasbord of natural supplements such as turmeric and fish oil. However, while most other cancer patients stick to a typical mix of chemo and supplements, I have long been exploring a whole other sphere of cancer medicines in addition,... read more

Cholangiocarcinoma Foundation Awards $365k in Research Fellowship Grants in Largest Funding Cycle to Date

Cholangiocarcinoma Foundation Awards $365k in Research Fellowship Grants in Largest Funding Cycle to Date 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 a total of $365,000 in its largest funding cycle to date. Since 2015, the Foundation has awarded more than $1.9 million in funding for innovative, high-quality research. In accordance with the Foundation’s Research Philosophy, CCF supports promising projects that are less likely to get traditional funding. Open-access research that catalyzes collaboration and focuses on finding a cure... read more

The Cancerbet – or What Cancer Does and Does NOT do – from A to Z

The Cancerbet – or What Cancer Does and Does NOT do – from A to Z By Susan Braden A          Cancer AGES us but isn’t aging what we long for?! B          It BLINDS us to far away, future concerns. It brings us to a “near- sighted” living where we don’t miss the present. C          Cancer gives us CAUSE – a reason to try treatments and trials for new therapies; not only for our own survival, but for those who follow us along this path. D          It DEVELOPS our strength. Each day is a victory, no matter the difficulties and pain. E          It EDUCATES us about our physical selves. From our largest organs to our smallest mutated strand of DNA, our body is a wonderful, complex system that is a vast frontier for exploration and... read more

2019 Annual Conference Videos

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... read more

The 2019 Annual Conference T-Shirt Design Contest

CCF is excited to announce our Annual Conference t-shirt logo contest. The logos will be printed on a white sport t-shirt with green 3/4 sleeves. Contest Rules Use this entry form to submit your logo design Limit design to a maximum of 2 colors Limit design to no larger than 10 inches square 5 designs will be posted on our Facebook page for voting. The winning design will be the logo with the most “likes” Submission deadline is Sunday, September 30th Questions? Email jordan.giles@cholangiocarcinoma.org   Name* First Last What is your relationship with cholangiocarcinoma?Patient (personally diagnosed)CaregiverFriend or Relative of PatientOtherAddress Street Address Address Line 2 City State / Province / Region ZIP / Postal Code AfghanistanÅland IslandsAlbaniaAlgeriaAmerican SamoaAndorraAngolaAnguillaAntarcticaAntigua and BarbudaArgentinaArmeniaArubaAustraliaAustriaAzerbaijanBahamasBahrainBangladeshBarbadosBelarusBelgiumBelizeBeninBermudaBhutanBoliviaBonaire, Sint Eustatius and SabaBosnia and HerzegovinaBotswanaBouvet IslandBrazilBritish Indian... read more

Thoughts and Memories of Marion Schwartz

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 work and considered you friends and colleagues. Today, at CCF we will be thinking of Marion, all she accomplished and all those she personally shepherded through life with compassion and great tenderness. She had a wonderful gift that she shared with all of us. She was and will continue to be an enormous blessing to our community. Love to all, Stacie C. Lindsey President & Founder Cholangiocarcinoma Foundation We... read more

Mouse Models and Avatars

According to the U.S. Bureau of Labor Statistics, in 2008, healthcare positions accounted for 12% of all private-sector jobs, a number that has consistently been on the rise.(1) Included in this data were such vocations as pharmacists, physical therapists, dental hygienists, medical assistants, home health aides, etc. Many non-M.D. professionals within this population have had some organized biology education, however, as with many jobs, the farther we get from our schooling, the less we retain. Even for those who have had formal, scientific education, many cancer research mechanisms are only vaguely familiar. For the rest of us, the science ascends to peaks that rise beyond our comprehension, and there typically isn’t incentive for lay people to immerse themselves in a discipline that takes many... read more
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