News
Five for Friday – 5 reasons why you should participate in research with Ciitizen
You are the future of research, and we want you to know that your validated data matters. When you request your health records and share your data with Ciitizen, you are helping us find a cure for cholangiocarcinoma (CCA).
Read MoreFive for Friday – 5 events to add to your calendar as we begin the new year
We hope you had a Happy New Year! Exciting things are happening at Cholangiocarcinoma Foundation (CCF) this year, including celebrating our 15th Anniversary and more.
Read MoreLight It Green for Cholangiocarcinoma
Please help us participate in CCF’s Light It Green For CC project! We are excited to grow this campaign in 2021.
Read MorePatient Highlight – Bekki Slater
I am a 40 year old mother of two, Grace (9) and Connor (7). I am incredibly lucky to be married to my best friend and love of my life Jason, who is the pillar of our family.
Read MoreEat to Beat Disease
“Let food by thy medicine and let medicine be thy food”. Hippocrates is thought to be the source of this quote, but Dr. William Li, world-renowned physician, scientist, and author, reiterated this concept during his keynote speech at the Cholangiocarcinoma Foundation’s Annual Conference on August 4, 2020. Dr. Li authored a recently published book entitled,…
Read MoreLongterm Patient Highlight – Matt Reidy
Matt Reidy was diagnosed in 2013 with stage II perihilar CC. Matt is from Richmond, VA, is married with 4 children ages 12-25. Matt is a retired IT Executive and enjoys wood. working, sailing, water sports.
Read MoreFive for Friday – 5 impactful ways you can make a year-end gift
As 2020 comes to a close, there are a number of opportunities to support the work of the Cholangiocarcinoma Foundation. Your Year-End Giving can make a long-term impact.
Read MoreCholangiocarcinoma Foundation Receives a $500,000 Gift, the Largest in its History, from the Scott Family in Memory of Andrea Scott
The Cholangiocarcinoma Foundation (CCF) received a gift of $500,000, the largest in its history, from The Scott Family, in memory of wife and mother, Andrea (Breuhan) Scott, who lost her courageous 18-month battle with the disease in 2014.
Read MoreLongterm Patient Highlight – Tom Leitzke
My name is Tom Leitzke. I was born and raised in Sandusky, Ohio, and was living as an expatriate in Japan, managing global operations for a publicly-traded robotics company when I was diagnosed with perihilar cholangiocarcinoma (stage 3B) in 2007. I was 58.
Read MoreFive for Friday – 5 ways you can get involved with the 2021 Annual Conference
There is a lot of planning that goes on behind the scenes and we are working hard to make it the best conference yet. This week we are sharing 5 ways you can get involved with the 2021 Annual Conference now.
Read More2021 Annual Conference T-Shirt Design Contest!
CCF is excited to announce the 2021 Annual Conference t-shirt logo contest. CCF is now accepting logo proposals for t-shirts, which will be introduced for the Annual Conference.
Read MoreCholangiocarcinoma Foundation celebrates FDA’s Breakthrough Therapy Designation for Zanidatamab in Patients with Biliary Tract Cancer
The Cholangiocarcinoma Foundation (CCF) celebrates the November 30, 2020 FDA breakthrough therapy designation for Zanidatamab in patients with previously-treated HER2 gene-amplified biliary tract cancer. A HER-2 or Human Epidermal Growth Factor Receptor 2 mutation occurs when cancer causes the HER-2 cell to produce too much protein, resulting in cells dividing and growing too fast. HER-2…
Read MoreAlie Plouff and Candles for the Cure
My name is Alie Plouff, and I am a volunteer and former caregiver with the Cholangiocarcinoma Foundation. I first discovered the Cholangiocarcinoma Foundation when my parents returned home from the Annual Conference in Salt Lake City in 2016.
Read MoreSurvey Opportunity – Patient experiences of living with CCA
Researchers at Emory University are studying quality of life among patients with cholangiocarcinoma (CCA). Please consider taking this brief survey to help them better understand patient experiences for those living with CCA.
Read MoreFive for Friday – 5 ways you can get involved in Candles for the Cure
This holiday season, we are asking everyone to take part in our annual year-end holiday campaign called #CandlesForTheCure by lighting a virtual candle in honor or memory of friends or family who have been affected by cholangiocarcinoma.
Read MoreYour Year-End Giving Can Make A Long-Term Impact
Three impactful ways you can make a year-end gift As 2020 comes to a close, there are a number of opportunities to support the work of the Cholangiocarcinoma Foundation. One good thing to come out of the COVID Pandemic is the CARES Act (Coronavirus Aid, Relief, and Economic Security Act) provisions for charitable giving. The…
Read MoreCholangiocarcinoma Foundation celebrates FDA’s Acceptance Of New Drug Application For Infigratinib For The Treatment Of Cholangiocarcinoma
On behalf of patients and families impacted by cholangiocarcinoma, the Cholangiocarcinoma Foundation (CCF) celebrates the December 1, 2020 FDA acceptance of Infigratinib. QED Therapeutics, is a subsidiary of BridgeBio, which is focused on precision medicine for FGFR-driven cancers. Infigratinib is an oral FGFR1-3 selective inhibitor, for individuals with cholangiocarcinoma, or cancer of the bile ducts.…
Read MoreWe’re planning the 2021 Annual Conference and we need your feedback!
Home / Blog / We’re planning the 2021 Annual Conference and we need your feedback! We are hard at work planning our virtual Annual Conference, to be held March 31—April 2, 2021. One of the key components of the Conference is Patient Day, where we seek to provide our community with information, support and a…
Read MoreSurvivor Highlight: Libby Wolfe
My name is Libby Wolfe. I live in Pewaukee, Wisconsin. I grew up in Connecticut, went to college in Virginia, and moved to Chicago in the 1970s. In Chicago, I worked as a property manager for a Real Estate firm.
Read MorePatient Support Group
Each week we present the latest information and updates relevant to the CCF community. Support Groups will be held the 1st (Patient) and 3rd (Caregiver) week of every month and Educational Webinars will be held on the 2nd and 4th week of each month. Please join us the first Thursday of the month for a…
Read MoreFive for Friday – 5 sales that will be going on this weekend
Holiday sales events are happening from November 27th – December 1st. Need a housewarming gift? A sweatshirt or hat to keep you warm this winter? A stocking stuffer? Look no further than the CCF Awareness Store.
Read MoreStacie Lindsey to Receive Luminary Award for Advances in GI Cancers
Stacie C. Lindsey, Chief Executive Officer & Founder of the Cholangiocarcinoma Foundation is one of five leading individuals who will receive a Luminary Award in GI Cancers from OncLive and The Ruesch Center at their virtual 11th Annual Ruesch Symposium. The award winners are being honored for their lifetime achievements focused on finding cures for…
Read MoreFive for Friday – 5 ways you can give back to CCF
The reason the holidays are “the most wonderful time of the year” is that we’re reminded to be thankful, reflect on our blessings, and do acts of kindness that bless us in return. As the holiday season approaches celebrate the spirit of the season by giving back.
Read MoreGiving Thanks by Giving Back
Help us meet our goal of 100 new sign-ups by 2021! Join the CCF registry through Ciitizen to advance research for cholangiocarcinoma, and Ciitizen will donate $25 to CCF. During the “Giving Thanks by Giving Back” Campaign, CCF and Ciitizen are partnering up with the goal of helping at least 100 patients collect, summarize and share…
Read More#GivingTuesday 2020
Giving is not just about making a donation, it’s about making a difference! Last year on Giving Tuesday, people came together on Facebook to raise more than $120 million to support the causes they care about. This year, you can participate in #GivingTuesday by sharing a UNselfie, which tells the world why it’s important to…
Read MoreFive for Friday – 5 projects that you can participate in
In our most recent November Volunteer Meeting, we discussed the newest projects that we are working on and how YOU can get involved. No matter your skills or availability, we have a place for you.
Read MoreFive for Friday – 5 of our newest items in the CCF Awareness Store
Need a housewarming gift? A sweatshirt or hat to keep you warm this winter? Look no further than the CCF Awareness Store. This week we’d like to highlight 5 of our newest items!
Read MoreWebinar: NuTide 121 Clinical Trial
NuCana will introduce the science behind NUC-1031, the medicine being compared in combination with cisplatin in the NuTide:121 study against the current standard of care in Biliary Tract Cancer, gemcitabine and cisplatin.
Read MoreFive for Friday – 5 great ways to support CCF in our mission to find a cure and improve the quality of life for patients
As we approach the end of the year and giving season, here are 5 great ways to support CCF in our mission to find a cure and improve the quality of life for patients.
Read MoreFive for Friday – 5 ways you can get involved with CCF
The Holiday Season is approaching us and will be here before we know it. This week we’d like to share 5 ways you can get involved with the CCF community and help make a difference.
Read MoreWebinar: The RELEASE trial and the technology behind
This webinar is intended for patients with inoperable extrahepatic cholangiocarcinoma (CCA) who consider enrolment into a clinical trial.
Read MoreCCF wants you to join it’s first ever Turkey Trot
Join the Cholangiocarcinoma Foundation’s first Virtual Turkey Trot Run/Bike/Walk! TeamCCF and the Cholangiocarcinoma Foundation are hosting their 1st Annual Virtual Turkey Trot. It is open to different physical activities such as running, biking, or walking. The goal is to encourage participation in healthy and fun physical activity while raising funds for cancer research. Participants choose…
Read MoreRoz Kuvakos, A Life Rooted in Aloha
Roz has always been very healthy and active, especially among us sibs, and the news of her having cholangio took us by storm. Being the first born, her “to do” list began to grow: schedule doctor appointments, research on how to fight this unknown disease…
Read MoreFive for Friday – 5 of our latest blog posts
The Cholangiocarcinoma Foundation’s Blog has been home to a variety of content ranging from patient perspectives to updates on medical advancements. Patients share news and personal anecdotes, and the blog also serves as a resource for you to familiarize themselves with the Foundation.
Read More2021 Cholangiocarcinoma Foundation’s Annual Conference
We are pleased to announce that the 8th Annual Cholangiocarcinoma Foundation Conference will be held virtually March 31st- April 2nd, 2021. John Bridgewater, MD, PhD of the UCL Cancer Institute, London and Funda Meric-Bernstram, MD of MD Anderson Cancer Center will Co-Chair the event.
Read MoreFive for Friday – 5 exciting events that are happening soon
We want to make sure you’re in the know. This week we’d like to share 5 exciting events that are happening soon. Be sure to add these events to your calendar and share them with your friends and family.
Read More2021 Cholangiocarcinoma Annual Conference to be held March 31 Through April 2, 2021
Drs. Bridgewater and Meric-Bernstram to Chair The 8th Annual Cholangiocarcinoma Foundation Conference will be held virtually March 31st- April 2nd, 2021. John Bridgewater, MD, PhD of the UCL Cancer Institute, London and Funda Meric- Bernstram, MD of MD Anderson Cancer Center will Co-Chair the event. Dr. Bridgewater specializes in gastrointestinal oncology, with a particular interest…
Read MoreFB Live: Living with Cholangiocarcinoma – Journey to Diagnosis & Beyond
Facebook Live event, “Living with Cholangiocarcinoma – Journey to Diagnosis & Beyond.” We hope you tune in to hear from those in the #cholangiocarcinoma community!
Read MoreShould I get a Second Opinion?
Mike Shane Memorial Fund (MSMF) just recently turned one! In the past year MSMF has helped 7 cholangiocarcinoma patients get a second opinion. All donations they receive go to second opinions.
Read MoreBiomarker reveals how aggressive biliary tract cancer is in patients
As biliary tract cancer (BTC) patients typically survive less than one year on standard-of-care chemotherapy, adapting prognostic biomarkers to guide their management remains challenging.
Read MoreFive for Friday – a few ways you can easily give back to the Cholangiocarcinoma Foundation
Every contribution, regardless of size, makes a difference and is an investment in education, research, and advocacy to find a cure for cholangiocarcinoma.
Read MoreFive for Friday – 5 resources that will help find the right clinical trial for you
Finding a cure is at the heart of all we do for our patients and clinical trials are essential to our mission. This week we’d like to share 5 resources that will help find the right clinical trial for you!
Read MoreWebinar: Clinical Trial Finder
CCF and Ciitizen launch first of it’s kind Clinical Trial matching powered by a patient’s complete medical history, automatically.
Read MoreLisa’s Rare Cancer Story
When I thought of the word rare I envisioned something precious, beautiful and exceptional, like an amazing piece of art in a museum; something that brought joy and smiles to people. I didn’t think of diseases until I was diagnosed with Stage IV Cholangiocarcinoma in 2010.
Read MoreFive for Friday – 5 ways YOU can get involved in Rare Cancer Day to help us spread awareness
We cannot do this without your help! This week we’d like to share 5 ways YOU can get involved in Rare Cancer Day to help us spread awareness.
Read MoreRare Cancer Day 2020
Don’t forget to mark your calendar for Rare Cancer Day, on September 30th. The Cholangiocarcinoma Foundation (CCF) partners with NORD every year to join together and raise awareness for rare cancers, specifically cholangiocarcinoma.
Read MoreFive for Friday – 5 ways to use nutrition to fight cancer
This week we’d like to share 5 resources that explain the benefits of nutrition while being treated for cancer.
Read MoreWebinar: Modified Immune Cells and a Vaccine After High-Dose External Beam Radiation
The Mayo Clinic presents Modified Immune Cells (Autologous Dendritic Cells) and a Vaccine (Prevnar) After High-Dose External Beam Radiation.
Read MoreGrateful Patient Day 2020
On September 7th, 2020 the Cholangiocarcinoma Foundation (CCF) participated in Grateful Patient Day. Each year, Grateful Patient Day spotlights stories of gratitude for doctors, nurses, researchers, medicines and procedures that help patients.
Read MoreGreen Out for Our Baseball Coach
Cancer doesn’t just change the life of the patient; it changes the life of a community. And that is what we are in Palmyra, Pennsylvania, a community. Coach Geoff Good, a father, husband and a friend, was diagnosed with Cholangiocarcinoma.
Read MoreCaring for the Caregiver
Being a caregiver is the role of a lifetime. I think most of us take on this role without any hesitation. This was true in my case. Alongside my dad and sister, I took on the role of being one of my mom’s caregiver’s after her cholangiocarcinoma diagnosis.
Read MoreFive for Friday – 5 ways you can share your gratitude
In preparation for Grateful Patient Day, we’d like to share 5 ways you can share your gratitude for those that have helped in your cholangiocarcinoma journey – whether it be doctors, nurses, researchers, therapists, or technicians.
Read MoreRemembering Dr. Supriya ‘Shoop’ Saha
Dr. Supriya Kumar “Shoop” Saha passed away on May 6, 2020 after battling the complications from a bone marrow transplant for the treatment of myelofibrosis. He was only 40 years old. He was one of the first recipients of a Cholangiocarcinoma Fellowship Award.
Read MoreThe woman who forgot today
We should, I thought, be compatriots: brothers-in-arms who’d lost their loved-one to an unfair, unlikely illness. What were chances that I’d come from South Africa to Italy only to stumble across someone who’d lost her husband to the same rare cancer my son succumbed to? I was even more astonished to discover we’d shared the same oncology team.
Read MoreFive for Friday – 5 Resources to Help Navigate Depression.
During our 2020 Annual conference, Incyte shared the results from a 700 patient survey. The survey found that the quality of life for patients with cholangiocarcinoma is heavily impacted by a host of symptoms and side effects, including depression that may be severe.
This week we’d like to offer 5 reliable resources to help navigate through depression.
Read MoreFive for Friday – 5 Events to Add to Your Calendar
We have some amazing events planned in the future that you’re going to want to be a part of. Whatever your personality or interest there is something for you.
This week we are sharing 5 upcoming events that you’ll want to add to your calendar.
Read MoreFive for Friday – 5 tips on how to get behind Biomarkers Matter
Cholangiocarcinoma Foundation (CCF) is a proud member of The Working Consistent Group. Together with 41 other advocacy organizations, we committed to clarifying and promoting consistent use of common terms for biomarker and germline genetic testing.
Read MoreWebinar: “Should I get a second opinion?”
The first diagnosis isn’t always correct or complete. According to a study by the Mayo Clinic, 88% of original diagnoses were changed or refined by a second opinion.
Read MoreFive for Friday – 5 fundraising events
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.
Read MoreFive for Friday – 5 highlights from the Annual Conference
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 MoreThe 2020 Annual Conference was a Success!
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 MoreFive for Friday – 5 ways you can join Annual Conference fun
Each week, we’re going to offer five tips that will help you stay educated, informed and hopeful about all things cholangiocarcinoma.
CCF’s Annual Conference has gone virtual, that means EVERYONE can attend!
In preparation, we’d like to share 5 things to do before the conference.
Read MoreWebinar: Virtual Ciitizen Onboarding Party
Join us for a virtual onboarding event with our partners at Ciitizen to learn how you can use Ciitizen’s platform to take control of your medical data and contribute to important medical research for cholangiocarcinoma.
Read MoreWebinar: Patient Health Data Rights & Privacy
Subscribe to our YouTube Channel Do you have questions about your health data privacy and your rights to access your own medical records? Join us for an educational webinar with health privacy and security expert Deven McGraw, who is Ciitizen’s Chief Regulatory Officer. Deven previously directed U.S. health privacy and security as Deputy Director, Health…
Read MoreCholangiocarcinoma Foundation Consortium Moves to Clarify and Promote Consistent Use of Common Terms for Biomarker and Germline Genetic Testing
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 MoreTwo webinars this week!
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 MoreFive for Friday – 5 things to do before the conference
Each week, we’re going to offer five tips that will help you stay educated, informed and hopeful about all things cholangiocarcinoma.
CCF’s Annual Conference has gone virtual, that means EVERYONE can attend!
In preparation, we’d like to share 5 things to do before the conference.
Read MoreCCF is hosting a Lip Sync Battle!
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 MoreFive for Friday – 5 ways you can win prizes at this year’s Annual Conference
Each week, we’re going to offer five tips that will help you stay educated, informed and hopeful about all things cholangiocarcinoma.
CCF’s Annual Conference has gone virtual, that means EVERYONE can attend!
This week we present 5 ways you can win prizes at this year’s Annual Conference.
Read MoreCCF Webinar Series : July’s Patient Support Group
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 MoreComplete a 5-minute COVID survey for a chance to win CCF Gear
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 MoreWebinar: Clinical Trials 101
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 MoreFive for Friday – 5 ways you can get involved with Moving for the Cure
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 MoreFive (really, eight) for Friday – 5(+3) reasons why this is a can’t miss conference
For this week’s “5 for Friday”, we changed it up a little bit! We’re proud to present 5 (+3) reasons why this is a can’t-miss conference!
Read More#MapItForward & the Real World Genomics Study Launch!
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 MoreFive for Friday – 5 ways to stand up against racism and injustice
Five for Friday was created as a way to provide tips to help navigate you through these difficult times. We are saddened by the recent death of George Floyd, Breonna Taylor, Ahmaud Arbery and others.
In an effort to adapt to the current events we have decided to share 5 ways to stand up against racism and injustice.
Read MoreWe know there is work to do…
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 MoreCCF Webinar Series : June’s Patient Support Group
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 MoreFive for Friday – Get moving safely now that restrictions are being lifted
Each week, we’re going to offer five ways you can fight COVID-19, this week we’d like to share 5 ways to get moving safely now that restrictions are being lifted.
Read MoreFive for Friday – Getting Involved with Research (from Home!)
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, 5 ways you can get involved with research (from home!)
Read MoreFive for Friday – Dealing with Financial Worries
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, 5 things to do if you’re worried about your finances during COVID-19.
Read MoreFive for Friday – Grocery Shopping
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, 5 Tips for Grocery Shopping During a Pandemic.
Read MoreCCF Weekly Webinar Series: Dealing with Anxiety, Fear & Depression
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 MoreFive for Friday – Working from Home
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, 5 Tips for Working Remotely.
Read MoreA Clinical Trial Saved My Life
Diagnosed with stage IV cholangiocarcinoma, I enrolled in a study investigating tumor-infiltrating lymphocyte therapy. That was 10 years ago.
Read MoreFive for Friday – Benefits of Volunteering
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, 5 Benefits from Volunteering.
Read MoreHigh-Five for Volunteers
“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 MoreFDA Approves Pemigatinib for Advanced Cholangiocarcinoma
FDA Approves Incyte’s Pemazyre™ (pemigatinib) as First Targeted Treatment for Adults with Previously Treated, Unresectable Locally Advanced or Metastatic Cholangiocarcinoma April 18, 2020 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…
Read MoreFive for Friday – Healthy Daily Practices
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, 5 Ways to Maintain a Healthy Mind.
Read MoreCOVID-19 Financial Resources for People with Cancer
Our friends at cancer.net have put together a list of national/general COVID-19 financial assistance resources.
Read MoreFive for Friday – Maintain a Healthy Mind
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, 5 Ways to Maintain a Healthy Mind.
Read MoreThe Beginning
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#stopthespread
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 MoreCDC Guidelines for Cloth Face Coverings
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 MoreFive for Friday – Fight Misinformation
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, 5 Ways to Fight Misinformation.
Read MoreVolunteer Appreciation Month!
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 MoreLive Webinar: Navigating Your Care in Uncertain Times
During these unprecedented times Dr. Javle and Dr. Kelley will answer your questions to help address the specific care, treatment, and access needs of our community during the COVID-19 pandemic.
Read MoreCoronavirus: What People with Cancer Should Know
Some types of cancer and treatments such as chemotherapy can weaken your immune system and may increase your risk of any infection, including with SARS-CoV-2, the virus that causes COVID-19.
Read MoreThree Tips for Reluctant Superheroes
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 MoreFive for Friday – Do the Five!
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 MoreMayo Clinic COVID-19 Q&A Podcast
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 MoreThe One-Two Punch: Cancer And Coronavirus
You have cancer. Your treatment is difficult, laborious, expensive, and stressful- even on even the best of days.
Enter, coronavirus. What now?
Read MoreWe’re here for you
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 MoreWhat COVID-19 does to the human body
Home / Blog / 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 MoreDealing with Uncertainty
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 MoreWhat is TeamCCF?
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 MoreWhat is TeamCCF?
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 MoreMusically Inclined Patients & Survivors- This is for you!
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 MoreMy 15 years with CCA
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 MoreFebruary 12th is World Cholangiocarcinoma Day!
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 MoreWhy Brad and Geri Clements Gave $100K to the Cholangiocarcinoma Foundation for Research
“A big reason for our donation is the love we have for Stacie and everything she has done for the Cholangiocarcinoma Foundation (CCF) and the patient community. For years, we have watched our family’s involvement with CCF and now that we are in a position to help, we are trying to make the biggest impact…
Read More2020 Annual Conference Patient Scholarship
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 MoreBachini-Keifer Fund
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 MoreCan a “Silent Killer” be Beaten by Better Data?
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 More2020 Pacific Northwest Cholangiocarcinoma Regional Symposium
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 MoreThanksGiving, ThanksLiving
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#GivingTuesday 2019
“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 MoreTake Control of Your Health Data
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 MoreEverything Happens for a Reason
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 MoreMike Shane Memorial Fund
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 MoreOktoberfest 2019
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 MoreNotes from Chicago
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 MoreTeamCCF at the Chicago Marathon
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 MoreNo One Fights Alone
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 MoreBreast cancer survivor speaks out about being your own advocate
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.
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